Genetic condition; specifically, the most common form of dwarfism
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5 episodes with Achondroplasia
3 episodes with Achondroplasia
4 episodes with Achondroplasia
2 episodes with Achondroplasia
3 episodes with Achondroplasia
2 episodes with Achondroplasia
2 episodes with Achondroplasia
2 episodes with Achondroplasia
2 episodes with Achondroplasia
All fresh back from the latest EPOS meeting in Toulouse! We Welcome listeners back to the 12th EPISODE of the BSCOS Paediatric Orthopaedic Digest (POD)cast with special guest Darius Rad of Southampton Childrens Hospital! Heradling from Transylavania in Romania, he trained at Royal London Hospital, Great Ormond Street and Noah's Ark Children's Hospital for Wales before being appointed as a consultant in Southampton where hei s part of a growing team! His favourite poem is The Road Not Taken by Robert Frost: “I shall be telling this with a sigh, Somewhere ages and ages hence: Two roads diverged in a wood, and I—I took the one less travelled by, And that has made all the difference.” We scoured 35 journals & highlighted the most impactful studies that we feel can change practice or improve outcomes in Paediatric Orthopaedics. Also…we play EURO-HOT or EURO-NOT so stay tuned and be educated on 90's European Dance Music!Follow Updates on @BSCOS_UK on X / Instagram!REFERENCES:1. Autism screening and diagnostic outcomes among toddlers born preterm. Hamner et al. Dev Med Child Neurol. March 2025. PMID: 39165130 2. The effect of vitamin D on the speed and quality of pediatric fracture healing. Hendrych et al. J Child Orthop. November 2024. PMID: 39563984 3. Spontaneous recovery in the majority of stable dysplastic hips treated with active surveillance. Theunissen et al. Bone Joint J. February 2025. PMID: 39889762. 4. Proximal versus distal tenotomy of the iliopsoas tendon in the surgical treatment of developmental dysplasia of the hip: a randomized clinical trial. Doski J. Int Orthop. March 2025. PMID: 39853427. 5. Intraoperative Tranexamic Acid Infusion Reduces Perioperative Blood Loss in Pediatric Limb-Salvage Surgeries: A Double-Blinded Randomized Placebo-Controlled Trial. El Ghoneimy et al. J Bone Joint Surg Am. March 2025. PMID: 39841811. 6. Morphological Improvement of the Epiphyseal Plate and Trochlea After Surgical Correction in Skeletally Immature Patients With Patellar Dislocation and Trochlear Dysplasia. Hao et al. Am J Sports Med. February 2025. PMID: 39743963. 7. Dexterity assessment of hospital workers: prospective comparative study. Joseph et al. BMJ. December 2024. PMID: 39706594. 8. Subtalar arthroereisis with metallic implant is a safe and effective treatment for pediatric patients with symptomatic flexible flatfeet. A 10-year clinical and radiographic follow-up. Moraca et al. Foot Ankle Surg. Jan 2025. PMID: 38972783 9. The risk of refracture and malunion in children treated for diaphyseal forearm fractures: a retrospective cohort study. Husum et al. Acta Orthop. Feburary 2025. PMID: 39993177; 10. Optimal Timing for Advanced Imaging in Childhood Bone and Joint Infection. Hunter et al. J Pediatr Orthop. Feburary 2025. PMID: 39307981. 11. Get Over It: Surgical Residents' Responses to Simulated Harassment. A Multi Method Study. Johnson et al. J Surg Educ. March 2025. PMID: 39818080. 12. Oral Infigratinib Therapy in Children with Achondroplasia. Savarirayan et al. N Engl J Med. February 2025. PMID: 39555818. 13. From Sheep to Sling: Pediatric Injuries Due to Rodeo Mutton Bustin'. Schultz et al. J Pediatr Orthop.April 2025. PMID: 39831656. Follow Hosts: @AnishPSangh @AlpsKothari @Pranai_BTune in for the next episode in Summer! Have a fantastic Easter!
Good morning from Pharma and Biotech daily: the podcast that gives you only what's important to hear in Pharma e Biotech world. Sage has rejected Biogen's unsolicited buyout offer and will seek strategic alternatives. Biogen and Eisai have received approval for a monthly maintenance regimen for Alzheimer's drug Leqembi. Veru's drug has shown promise in sparing lean mass in overweight adults on Wegovy. The Duchenne muscular dystrophy space is on the verge of a pivotal era with several companies developing investigational therapies. Akero has rebounded in a mid-stage trial, Daiichi Sankyo is optimistic for 2025, and Allakos is cutting its workforce. The text discusses the advancements in the Duchenne Muscular Dystrophy (DMD) space as it enters a pivotal era, with companies such as Capricor Therapeutics, Wave Life Sciences, and RegenxBio working on investigational therapies to address unmet needs. It also mentions Daiichi Sankyo's recent success with the approval of Astrazeneca-partnered Dato-DXD. Additionally, new treatments are in development for Achondroplasia to challenge Biomarin's Voxzogo. Novo's obesity drug shows promising results, Merck's Keytruda combo fails in a Phase III trial for GI cancer, and Tris Pharma wins late-stage for a non-opioid painkiller. The text also invites feedback from readers on topics they would like to see covered in the future.
On this MADM, Dr. Klane White is sharing about the most common form of dwarfism, achondroplasia. Listen & share. Sponsor: SIMRP themarkwhiteshow.thesimrp.com
In this episode, we review the high-yield topic of Achondroplasia from the MSK section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets
Comedian and educator Fats Timbo joins Dr Alex George to share her inspirational story from being bullied as a child to becoming a viral sensation on TikTok. In part 1, Fats shares what it was like to grow up with Achondroplasia (a common form of dwarfism), why she prefers to be described as a ‘Little Person' and the shocking choice her mother was offered while she was pregnant. Plus, she explains how social media changed her life, tips on how to have a healthy relationship with social media and how she overcame nerves to try stand up comedy. Follow @fatstimbo and get her book ‘Main Character Energy: 10 Commandments to Living Life Fearlessly'Follow the podcast on Instagram @thestompcastTo improve your mental fitness, get Dr Alex's book The Mind ManualDownload Mettle: the mental fitness app for men Hosted on Acast. See acast.com/privacy for more information.
This week on Why Golf we've travelled to find out more about this year's G4D Open! Di Stewart speaks to Joakim Bjorkman, winner of 35 worldwide titles, who shares his inspiring story from discovering he had Achondroplasia (of short stature), to finding solace in golf along with the current difficulties he's still overcoming in the game. We also hear from President of EDGA Dr Tony Bennett, and Director of Golf Development at The R&A Kevin Barker, to find out what makes the G4D Open, a competition for the world's most talented golfers with a disability, so special. Find more Why Golf content on Instagram, and watch this episode on YouTube here. To find out more about everything the Why Golf platform has to offer, head to thisiswhygolf.com. Submit your messages to the team here! The Why Golf podcast is presented by Skyscanner.
In this episode, we review the high-yield topic of Achondroplasia from the Pediatrics section. Follow Orthobullets on Social Media: Facebook Instagram Twitter LinkedIn YouTube --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message
As the duty anaesthetist you are called down to the antenatal clinic by the obstetric team to see a pregnant woman with achondroplasia who is booked to deliver in your hospital. What are the anaesthetic issues which can arise in this condition? What evidence is there in the literature for the optimal anaesthetic techniques? What will you discuss with this woman and how will you counsel her? Join Declan and I as we discuss the anaesthetic issues of this relatively rare but sometimes challenging condition... References Dumitrascu CI, Eneh PN, Keim AA, Kraus MB, Sharpe EE. Anesthetic management of parturients with achondroplasia: a case series. Proc (Bayl Univ Med Cent). 2023 Dec 20;37(1):63-68. doi: 10.1080/08998280.2023.2261084. PMID: 38173994; PMCID: PMC10761160. Lange, E.M.S., Toledo, P., Stariha, J. et al. Anesthetic management for Cesarean delivery in parturients with a diagnosis of dwarfism. Can J Anesth/J Can Anesth 63, 945–951 (2016). https://doi.org/10.1007/s12630-016-0671-5 15 Ways Pregnancy Is Different For Little People - Good Lay Person Website
Welcome to Mummahood Uncensored!This week's episode of our podcast is a truly remarkable and heartfelt conversation with the incredible Rosie Drage from @postnatalminds. Rosie's son, Arlo, was diagnosed with Achondroplasia when she was 28 weeks pregnant, and their journey has been nothing short of inspiring.In this raw and honest conversation, Rosie opens up about the challenges she and her family have faced since Arlo's diagnosis. She shares the ups and downs, the fears and the triumphs, and the incredible strength and resilience they have discovered along the way.Listening to Rosie's story is truly eye-opening. It puts life into perspective and teaches us to appreciate the little things that often go unnoticed.Follow Rosie @postnatalminds
Samantha Rayburn-Trubyk (she/her) lives in Winnipeg, Manitoba with her husband Ryan and son Yale. Samantha and Yale were born with Achondroplasia, a form of dwarfism. Samantha holds a Master's Degree in Disability Studies and a BA Adv. degree from the University of Manitoba where she majored in Labour and Workplace Studies and an Adult Learning certificate specializing in Workplace Learning from the University of Calgary. Samantha has worked in Human Resources for 20 years and is currently the Director of Human Resources for a Winnipeg based lumber and construction company. Since 2015, she has been President of Little People of Manitoba. In 2022, she was elected to the Board of Directors as the Advocacy Director for Little People of America, a non-profit with over 7,000 members. Samantha is an ardent advocate for the rights of people with disabilities including little people. In 2017, she advocated for Manitoba to become the first province to annually declare October 25th as Dwarfism Awareness Day. In 2019, together with Sport Manitoba successfully advocated for the removal of the term midget from all major sports leagues in Manitoba, and shortly thereafter Hockey Canada followed suit. Previously, Samantha was a featured speaker at RBC Winnipeg's Diversity & U employee event, the 3rd annual Winnipeg Women's March and at the Home Depot's Women in Retail conference. In 2021, she had an essay published in a book titled Still Living the Edges, a Disabled Women's Reader. In 2018 and in 2020, Samantha was named on Ace Burpee's Top 100 Most Fascinating Manitobans list. In 2021, was awarded the Manitoba 150 Nelly McClung Women Trailblazers award and in 2022, she was awarded the Queen Elizabeth II Platinum Jubilee Medal in Manitoba for her community work. Samantha has one goal in life, to break as many barriers as possible. Connect with Samantha: TikTok: @sam_truburn LinkedIN: www.linkedin.com/in/samantha-rayburn-trubyk — Connect with Jessica: https://jessicadumas.mykajabi.com/2024-link-in-bio-4c2ba954-b889-4a15-b857-ff29a427b4cc Jessica Dumas Coaching and Training and The Confidence and Communication Podcast is overflowing with appreciation to our first podcast sponsor, The Johnston Group Inc. The Johnston Group provides employee benefits to more than 30,000 businesses across Canada. Thank you so much for supporting my vision and investing in the podcast. Please accept my extreme gratitude, which will help get the message of self-love, healing, and growth out to a greater audience. Thank you to our sponsor, The Johnston Group Inc., who is helping bring this message to You. Follow them on Instagram: https://www.instagram.com/johnstongroupinc/
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In this week's episode I sat down with Emily Voorde. Emily is the Founder and CEO of INTO Strategies, a disability-led inclusion consultancy committed to bringing people with disabilities into campaigns, moments, and movements. Prior to starting INTO Strategies Emily was an Associate Director with NEWCO Strategies, a majority-women, majority-LGBTQ progressive consulting firm, served in the White House as the Associate Director in the White House Office of Public Engagement under President Biden, and worked on Mayor Pete's 2020 Presidential campaign. We discuss our shared experiences with the Osteogenesis Imperfecta (OI) Foundation and Little People of America respectively, who these organizations are actually for and serve, the role advocacy does and should play within these types of organizations and much, much more. Follow Emily: Instagram: @shortyvoorde LinkedIn: Emily Voorde Follow INTO Strategies: @intostrategies LinkedIn: INTO Strategies Website: https://www.intostrategies.com Email: emily@intostrategies.com Follow Me: Instagram: @jill_ilana , @alwayslookingup.podcast Website: https://www.jillianilana.com Email: alwayslookingup227@gmail.com This episode was edited and produced by Ben Curwin.
Every year on October 25, International Dwarfism Awareness Day celebrates little people. The day also spreads awareness for achondroplasia, a bone growth disorder that causes dwarfism. We are here today with Kali Braithwaite, former patient of Shriners Children's Portland Chief of Staff, Robert Bernstein, M.D. Dr. Bernstein was a part of Kali's medical team in Los Angeles, and the two have maintained a relationship after Dr. Bernstein made the move to Shriners Children's Portland. We are excited to dive in with Kali to talk about her life, her medical experience with Dr. Bernstein and Dwarfism Awareness Day.
Will is a British swimmer who represented Team GB at the Paralympic Games in Tokyo 2021. Will was born with Achondroplasia, a form of dwarfism, and following his return from Tokyo he started to speak up about the verbal abuse he often received due to his condition. He was fed up with the bullying behaviours which he is often subjected to and he put a call out on social media asking for change. Since then, he continues to swim train with the aim of being selected for the Paris 2024 Paralympic games, but he has also now met with politicians, been asked to present a TEDx talk and is even involved in creating a specific fashion brand for people with dwarfism.
Dr. Christopher Makarewich from University of Utah and the Salt Lake City Shriners Hospital returns to the show to discuss his recent research on guided growth in achondroplasia. The lightning round delves deeper into achondroplasia including medical treatment and elective limb lengthening. Your hosts are Josh Holt from University of Iowa, Carter Clement from Children's Hospital of New Orleans, and Julia Sanders from Children's Hospital Colorado. Music by A. A. Aalto. Citations Hemiepiphysiodesis for Lower Extremity Coronal Plane Angular Correction in the Distal Femur and Proximal Tibia in Children with Achondroplasia. Makarewich et al. JPO Sept 2023. Once-daily, subcutaneous vosoritide therapy in children with achondroplasia: a randomised, double-blind, phase 3, placebo-controlled, multicentre trial. Savarirayan et al. Lancet 2020. What's New in Limb Lengthening and Deformity Correction? Bafor and Iobst. JBJS Aug 2023. Achondroplasia and limb lengthening: Results in a UK cohort and review of the literature. Donaldson et al. Journal of Orthopaedics 2015. Extensive Limb Lengthening for Achondroplasia and Hypochondroplasia. Paley. Children 2021.
Hello everyone and welcome back to Private Parts, the podcast where nothing is off limits.It's Friday and we are back with another amazing guest!Today, Jamie is joined by creator, comedian, model and educator, Fats Timbo. Fats shares her incredible stories, from growing up with Achondroplasia and the struggles she's faced as a little person, to writing her inspiring debut book Main Character Energy, to even appearing in British Vogue!As well as this, she candidly discusses being bullied for being small, how she is striving to change people's perceptions of little people and how she doesn't interpret her disability as a negative. To follow Fats on Instagram, click here.To find out more about Fats comedy shows, click here.Don't forget to follow us on all our socials by clicking here, and make sure you don't miss out on our weekly episodes by subscribing. Hosted on Acast. See acast.com/privacy for more information.
Hello everyone and welcome back to Private Parts, the podcast where nothing is off limits.It's Friday and we are back with another amazing guest!Today, Jamie is joined by creator, comedian, model and educator, Fats Timbo. Fats shares her incredible stories, from growing up with Achondroplasia and the struggles she's faced as a little person, to writing her inspiring debut book Main Character Energy, to even appearing in British Vogue!As well as this, she candidly discusses being bullied for being small, how she is striving to change people's perceptions of little people and how she doesn't interpret her disability as a negative. To follow Fats on Instagram, click here.To find out more about Fats comedy shows, click here.Don't forget to follow us on all our socials by clicking here, and make sure you don't miss out on our weekly episodes by subscribing. Hosted on Acast. See acast.com/privacy for more information.
Ellie Simmonds OBE is a former Paralympic British swimmer. In 2008, at the young age of only 13, she won 2 gold medals at the Beijing Paralympic Games.Four years later, in her home games in London she won another 2 gold medals and set a world record time. She wasn't finished though…because then in 2016 at the Rio Paralympic games she won another gold medal, setting her second world record in the pool.Not only is Ellie a swimming legend but since retiring from sport last year, she has forged a successful career in the media, making documentaries, broadcasting on major sporting events, dancing on BBC's strictly come dancing and she is also an advocate for representation across disability. In this chat, Ellie demonstrates how from a young age, despite the fact that she was born with Achondroplasia, she has displayed a true champion mindset, which has enabled her to break down barriers and achieve her goals. We discuss the challenges she has faced retiring from her sport and how she has found the motivation to strive forwards into the next chapter of her life.
Friend of the show Sam opens up about how being a little person has shaped his perspective on life. His honesty and autheticity are palpable in the stories he shares. He gives his perspective on little people in the media with advice for how to treat people with physical disabilities with the kindness and respect they deserve. He is truly one of the most thoughtful and inspiring guests MMHC has ever interviewed. We hope you enjoy this conversation as much as we did.This show is part of the Spreaker Prime Network, if you are interested in advertising on this podcast, contact us at https://www.spreaker.com/show/5566171/advertisement
Kristen joins David Rintell, Head of Patient Advocacy at BridgeBio to tell her personal story about living with achondroplasia and how she became an advocate at just six years old. By third grade, Kristen was speaking to classrooms about what it is like to live with achondroplasia. In the episode, Kristen shares how she has dealt with health issues, overcame adversity and even published her story in the book, Little Legs, Big Heart. She explains that achondroplasia isn't just about height – there are other important quality of life concerns which she has learned to address, while also helping other families navigate the condition. Anne Lee, Senior Director of Global Patient Advocacy at BridgeBio, provides an overview of achondroplasia, the most common form of dwarfism. She explains how achondroplasia affects a protein in the body called the fibroblast grown factors receptor 3 or FGFR3, which results in slowing down bone growth. Achondroplasia is the most common cause of disproportionate short stature, affecting approximately 55,000 people in the United States and European Union, including up to 10,000 children and adolescents with open growth plates. Anne talks about her work in patient advocacy and what she has learned by listening to people and families living with achondroplasia.
3 months ago we interviewed Tara Lynn Townes, she joins us today with new updates on the app, a new book coming soon, how to get involved, and moreTara Lynn Townes – CEO of Bullying Buddy, LLC, is an impassioned speaker, author, motivator, inventor, and developmental therapist. With a Masters in Family and Human Development from Arizona State University, she has over twenty years of seasoned experience working with women, children, and families as a whole. With a B.S. in Child Development, and many years of professional life coaching, and counseling, Tara is passionate about being a positive example of love and acceptance to all mankind. As a philanthropist and mentor of the Women's Welfare to Work program and founder of Tiny Be Mighty, Tara was recognized by the California and Connecticut State Senate and Congress for her participation and work. When her son Corey was diagnosed with a condition known as Achondroplasia or “Dwarfism”, there was little doubt in Tara's mind that her son was born with a mighty purpose.Tara has embarked on a personal endeavor to raise awareness about dwarfism and to offer a resolution for bullying. Thus, she invented a new cutting-edge App called Bullying Buddy, to serve as a solution to bullying and adolescent suicide. Lastly, her life's creed is whatever we put in the universe will never return voided, so we should make it our best!https://thebullyingbuddy.com/our-team/https://tinybemighty.orghttps://tinybemighty.org/donate/
In this episode, we review the high-yield topic of Achondroplasia from the Pediatrics section. Follow Orthobullets on Social Media: Facebook: www.facebook.com/orthobullets Instagram: www.instagram.com/orthobulletsofficial Twitter: www.twitter.com/orthobullets LinkedIn: www.linkedin.com/company/27125689 YouTube: www.youtube.com/channel/UCMZSlD9OhkFG2t25oM14FvQ --- Send in a voice message: https://anchor.fm/orthobullets/message
A key goal of eugenics in the 20th century was to eliminate genetic defects from a population. Many countries pursued this with state-led programmes of involuntary sterilisation, even murder. We unpick some of the science behind this dark history, and consider the choices and challenges opened up by the science today. In the mid-19th century, an Augustinian friar called Gregor Mendel made a breakthrough. By breeding pea plants and observing how certain traits were passed on, Mendel realised there must be units - little packets - of information determining characteristics. He had effectively discovered the gene. His insights inspired eugenicists from the 1900s onwards. If traits were passed on by specific genes, then their policies should stop people with ‘bad' genes from having children. Mendel's ideas are still used in classrooms today - to teach about traits like eye colour. But the eugenicists thought Mendel's simple explanations applied to everything - from so-called ‘feeblemindedness' to criminality and even pauperism. Today, we recognise certain genetic conditions as being passed on in a Mendelian way. Achondroplasia - which results in short stature - is one example, caused by a single genetic variant. We hear from Professor Tom Shakespeare about the condition, about his own decision to have children despite knowing the condition was heritable - and the reaction of the medical establishment. We also explore how genetics is taught in schools today - and the danger of relying on Mendel's appealingly simple but misleading account. Contributors: Dr Brian Donovan, senior research scientist at BSCS, Prof Tom Shakespeare, disability researcher at London School of Hygiene and Tropical Medicine; and Dr Christine Patch, principal staff scientist in Genomic Counselling in the Society and Ethics Research group, part of Wellcome Connecting Science.
Episode SummaryThis episode features mother and daughter Bobbie and Angela Singletary. This dynamic duo shares their story, full of hardship, resilience, joy, love, and support. Bobbie, Angela, and two of Angela's kids all have achondroplasia, a form of dwarfism, as did Angela's late sister Cindy. Listen how Cindy's life at 33 could not be saved despite the huge sacrifices made by her mom and sister. We will hear how the Medicaid system failed them and how in spite of life challenges, including discrimination, systemic inequity, and personal struggles with alcohol, these women continue to advocate for others.For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://www.youtube.com/watch?v=1qFpEPqzdD0About Angela and BobbieAngela's Podcast: A Little PerspectiveAngela's WebsiteThe book featuring Bobbie's essay: A Little Perspective: REAL Stories of Little LadiesDocumentary EveryBODY Matters featuring AngelaAngela's interview with NPR about the treatment for achondroplasia: https://www.bodiespodcast.com/resource-pages/not-your-averageFrom This EpisodeTulane UniversitySpecial Delivery From Pregnancy to ToddlerhoodMindy Silva - Wired on DevelopmentThe Americans with Disabilities Act (ADA)Dwarfism: Raising a Little Person, Wisdom Shared episode with Audrey CurwinDwarfism: Life as a Little Person, Wisdom Shared episode with Jillian CurwinDwarfism: A Mother-Daughter Conversation, Wisdom Shared episode with Audrey and Jillian CurwinFind and Follow Carole and Wisdom Shared:https://www.caroleblueweiss.com/Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweissFollow me and send me a message on Facebook: https://www.facebook.com/caroleblueweissFollow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/Follow me on Instagram: https://www.instagram.com/carole_blueweiss/The Wisdom Shared TeamAudio Engineering by Steve Heatherington of Good Podcasting WorksSocial Media and Marketing Coordinator: Kayla Nelson
A key goal of eugenics in the 20th century was to eliminate genetic defects from a population. Many countries pursued this with state-led programmes of involuntary sterilisation, even murder. We unpick some of the science behind this dark history, and consider the choices and challenges opened up by the science today. In the mid-19th century, an Augustinian friar called Gregor Mendel made a breakthrough. By breeding pea plants and observing how certain traits were passed on, Mendel realised there must be units - little packets - of information determining characteristics. He had effectively discovered the gene. His insights inspired eugenicists from the 1900s onwards. If traits were passed on by specific genes, then their policies should stop people with ‘bad' genes from having children. Mendel's ideas are still used in classrooms today - to teach about traits like eye colour. But the eugenicists thought Mendel's simple explanations applied to everything - from so-called ‘feeblemindedness' to criminality and even pauperism. Today, we recognise certain genetic conditions as being passed on in a Mendelian way. Achondroplasia - which results in short stature - is one example, caused by a single genetic variant. We hear from Professor Tom Shakespeare about the condition, about his own decision to have children despite knowing the condition was heritable - and the reaction of the medical establishment. We also explore how genetics is taught in schools today - and the danger of relying on Mendel's appealingly simple but misleading account. Contributors: Dr Brian Donovan, senior research scientist at BSCS; Professor Tom Shakespeare, disability researcher at London School of Hygiene and Tropical Medicine; and Dr Christine Patch, principal staff scientist in Genomic Counselling in the Society and Ethics Research group, part of Wellcome Connecting Science. Music: Jon Nicholls Presenter: Adam Rutherford Producer: Ilan Goodman
A primary cause of dwarfism is a medical condition called Achondroplasia, a type of skeletal dysplasia. Joint pain, nerve compression, and early degenerative spine changes often cause pain in little people, which is under appreciated and poorly managed. We'll find out how Dee Miller, a little person, has moved past serious spinal pain and spinal […]
Tara Lynn Townes – CEO of Bullying Buddy, LLC, is an impassioned speaker, author, motivator, inventor, and developmental therapist. With a Masters in Family and Human Development from Arizona State University, she has over twenty years of seasoned experience working with women, children, and families as a whole. With a B.S. in Child Development, and many years of professional life coaching, and counseling, Tara is passionate about being a positive example of love and acceptance to all mankind.As a philanthropist and mentor of the Women's Welfare to Work program and founder of Tiny Be Mighty, Tara was recognized by the California and Connecticut State Senate and Congress for her participation and work. When her son Corey was diagnosed with a condition known as Achondroplasia or “Dwarfism”, there was little doubt in Tara's mind that her son was born with a mighty purpose.Tara has embarked on a personal endeavor to raise awareness about dwarfism and to offer a resolution for bullying. Thus, she invented a new cutting-edge App called Bullying Buddy, to serve as a solution to bullying and adolescent suicide. Lastly, her life's creed is whatever we put in the universe will never return voided, so we should make it our best!https://thebullyingbuddy.com/our-team/https://tinybemighty.org
Teatime with Miss Liz joining and sharing her T-E-A is the changemaker founder of Bullying Buddy App Tara Lynn Townes. Creating a safe place to bring awareness on bullying. December 1st 10 AM EST LIVE SHOWS ON MISS LIZ'S YOUTUBE CHANNEL & multiple podcast stations and apps TARA LYNN TOWNES- CEO of TBB Enterprises, is an impassioned speaker, author, motivator, inventor and developmental therapist. With a Masters in Family and Human Development from Arizona State University, she has over twenty years of seasoned experience working with women, children, and families as a whole. With a B.S. in Child Development, and many years of professional life coaching, and counseling, Tara is passionate about being a positive example of love and acceptance to all mankind. As a philanthropist and mentor of the Women's Welfare to Work program and founder of Tiny Be Mighty, Tara was recognized by the California and Connecticut State Senate and Congress for her participation and work. When her son Corey was diagnosed with a condition known as Achondroplasia or “Dwarfism”, there was little doubt in Tara's mind that her son was born with a mighty purpose. Tara has embarked on a personal endeavor to raise awareness about dwarfism and to offer a resolution for bullying. Tara with her son wrote a book and started a nonprofit “Tiny Be Mighty” and worked directly with families who have had children take their lives as a result of bullying. Thus, she invented a new cutting-edge App called Bullying Buddy, to serve as a solution to bullying and adolescent suicide. App is in both Apple/android and in every school in the USA. We would love the opportunity to explore possibilities. There is so much more that our team is doing to save children and to combat suicide and bullying. Websites: https://thebullyingbuddy.com/ https://tinybemighty.org/ Facebook: https://www.facebook.com/BullyingBuddyConsulting Instagram: https://www.instagram.com/bullyingbuddy/ LinkedIn: www.linkedin.com/company/bullying-buddy --- Send in a voice message: https://anchor.fm/misslizsteatimes/message
This week, Julie & Brandy have an epic conversation with super-sexy, content creator, King Dwarf. He's a little person (born with Achondroplasia), but more importantly, he's a total f*cking babe. ********* *** Click the link to listen to a FREE episode of our Patreon Podcast!! *No Politics! No ads! *** https://www.patreon.com/posts/windows-up-sing-42013006?utm_medium=clipboard_copy&utm_source=copy_to_clipboard&utm_campaign=postshare **CHECK OUT OUR T-SHIRTS! ** https://www.julieandbrandy.com/shop---4 DEALS FROM OUR SPONSORS! ** BETTER HELP: Get 10% off your first month at www.BetterHelp.com/DumbGay ** ** ATHLETIC GREENS: Get a FREE 1-year supply of vitamin D + 5 free travel packs at www.AthleticGreens.com/DumbGay ** *** EVERYPLATE: Get it for $1.49 per meal. Go to www.EveryPlate.com and enter promo code dumbgay149 at checkout *** ** NUTRAFOL: Save $15 off your purchase! Go to www.Nutrafol.com and use promo code DumbGay at checkout ** *** Dumb Gay Politics with Julie & Brandy **** Julie Goldman **** Brandy Howard **** Julie and Brandy *** The People's Couch *** DGP *** Gay Podcast *** Political Podcast *** Lesbian *** Bravo *** Housewives *** Queer *** Pride **** LGBTQ **** Starburns Audio **** Learn more about your ad choices. Visit megaphone.fm/adchoices
This week, Julie & Brandy have an epic conversation with super-sexy, content creator, King Dwarf. He's a little person (born with Achondroplasia), but more importantly, he's a total f*cking babe. ********* *** Click the link to listen to a FREE episode of our Patreon Podcast!! *No Politics! No ads! *** https://www.patreon.com/posts/windows-up-sing-42013006?utm_medium=clipboard_copy&utm_source=copy_to_clipboard&utm_campaign=postshare **CHECK OUT OUR T-SHIRTS! ** https://www.julieandbrandy.com/shop---4 DEALS FROM OUR SPONSORS! ** BETTER HELP: Get 10% off your first month at www.BetterHelp.com/DumbGay ** ** ATHLETIC GREENS: Get a FREE 1-year supply of vitamin D + 5 free travel packs at www.AthleticGreens.com/DumbGay ** *** EVERYPLATE: Get it for $1.49 per meal. Go to www.EveryPlate.com and enter promo code dumbgay149 at checkout *** ** NUTRAFOL: Save $15 off your purchase! Go to www.Nutrafol.com and use promo code DumbGay at checkout ** *** Dumb Gay Politics with Julie & Brandy **** Julie Goldman **** Brandy Howard **** Julie and Brandy *** The People's Couch *** DGP *** Gay Podcast *** Political Podcast *** Lesbian *** Bravo *** Housewives *** Queer *** Pride **** LGBTQ **** Starburns Audio **** Learn more about your ad choices. Visit megaphone.fm/adchoices
Did you know that this week is Dwarfism Awareness Month?? Meet Eden! @edenolivia.com_ She's 6 years old and she was diagnosed with Achondroplasia which is the most common form of dwarfism at 5 months. There are over 400 types of dwarfism. On today's episode of The Moments of Joy Podcast I'm sitting down with Little Eden's mom and her name is Missy. Will you listen in to be educated with me and join in to support this amazing community! Community, would you join me in dropping your green hearts below to show your support! Because even though many of us may have different diagnosis you'd be surprised to hear how much we as parents still have in common. I'm excited about this episode
Tara Lynn Townes – CEO of TBB Enterprises, is an impassioned speaker, author, motivator, inventor and developmental therapist. With a Masters in Family and Human Development from Arizona State University, she has over twenty years of seasoned experience working with women, children, and families as a whole. With a B.S. in Child Development, and many years of professional life coaching, and counseling, Tara is passionate about being a positive example of love and acceptance to all mankind. As a philanthropist and mentor of the Women's Welfare to Work program and founder of Tiny Be Mighty, Tara was recognized by the California and Connecticut State Senate and Congress for her participation and work. When her son Corey was diagnosed with a condition known as Achondroplasia or “Dwarfism”, there was little doubt in Tara's mind that her son was born with a mighty purpose. Tara has embarked on a personal endeavor to raise awareness about dwarfism and to offer a resolution for bullying. Thus, she invented a new cutting-edge App called Bullying Buddy, to serve as a solution to bullying and adolescent suicide. Lastly, her life's creed is whatever we put in the universe will never return voided, so we should make it our best!
Ellie Simmonds OBE is a former Paralympian swimmer. She won two gold medals for Great Britain at the age of 13 at the 2008 Paralympics; has many world and European titles and was awarded an MBE at the age of 14. In this episode, Ellie discusses what it was like to deal with immense pressure at a young age and how crucial a good team is. She was born with Achondroplasia (a form of Dwarfism), and discusses with Jake and Damian why it is so important to talk about disabilities in an open and upfront way. And Ellie shares the simple way she stays happy and appreciates the small moments…- - - - - -Thanks to WHOOP for sponsoring this episode - the new WHOOP 4.0 is a wearable Fitness and Health Coach that helps you to Sleep Better, Train Smarter and Recover Faster - ultimately helping you to be the best possible version of yourself - get your first month free on us - join.whoop.com/en-uk/HPPPre-order the new High Performance Daily Journal - 365 ways to become your best! smarturl.it/HPJournalWant even more from High Performance? We have launched our brand new premium podcast service 'High Performance Plus' for people who want to support the podcast, listen to ad-free episodes and have access to exclusive bonus content so we can get you even closer to a life of high performance. Sign up on Apple Podcasts apple.co/highperformance or Supercast https://highperformanceplus.supercast.com/Remember you can join the free HIGH PERFORMANCE CIRCLE! Just go to https://www.thehighperformancepodcast.com/thecircleYou will get:* Weekly Monday Motivation Newsletter with Book Recommendations, Discount Codes, and more!* Exclusive early video access* Keynote speeches that keep you learning* And much more! Our GDPR privacy policy was updated on August 8, 2022. Visit acast.com/privacy for more information.
In today's episode we will be talking to my good friend Prudie Woods, whose incredibly strong daughter Rosie went to school with my own daughter.As a part of her story Prudie will be sharing how everything changed 6 weeks after the birth of her daughter when they started to realise Rosie had Achondroplasia. This is a genetic condition affecting a protein in the body called the fibroblast growth factor receptor. In achondroplasia, this protein begins to function abnormally, slowing down the growth of bone in the cartilage of the growth plate.What followed was a big life lesson for their entire family on helping someone of short stature live in our world.In today's episode Pru shares:- The moment a nurse first told her she thought her daughter was disproportioned- What it has been like for their whole family as they help Rosie- How she has had to change how she helps Rosie as she becomes more independent and aware of how she fits into the world.Key Quotes“Be kind. That is all you have to do as human being. Be kind.“People are gonna be mean, disability or no disability.”‘If there's someone in your workplace who has a child with a condition. They may be being a duck on the water, but their little legs may be paddling really hard underneath.”If you want to support Prue and Rosie you can check out their children's book, ‘Rosie-May Blue: Mayhem at the pet show” via the website: https://www.rosiemayblue.comFor my other businesses you can find them through the websites:www.altitudefitnessarmidale.com.auwww.trialtitudeperformance.com.auOr you can follow them on Instagram:@Veravidyayoga@Altitudefitnessarmidale@trialtitudeperformance Hosted on Acast. See acast.com/privacy for more information.
At Spanish bullfights, diminutive people often perform for the amusement of the audience. Some people find the performances discriminatory. The performers themselves see it differently.
Diego interviews Laura, and she talks about living with achondroplasia dwarfism. Listener support for KeepTalking podcast: https://anchor.fm/keeptalkingco/support Get a KeepTalking membership to quickly improve your English fluency: https://keeptalking.co/ Check out our Instagram: https://www.instagram.com/keeptalkingco/ --- Support this podcast: https://anchor.fm/keeptalkingco/support
Inês' 9-year-old daughter, Clara, is living with achondroplasia. In this episode of On Rare, Inês describes what it was like to learn that her daughter has achondroplasia. She describes the steps she took to get Clara the medical care she needed in the early years of her life and how, in the midst of this stress, she remembered to enjoy being a mother to her newborn daughter. Finally, she tells us how she has watched Clara become a resilient, athletic child who has learned to compete against herself in a world that often caters to taller individuals. Daniela Rogoff, VP of clinical development at BridgeBio's affiliate company QED Therapeutics, joins the conversation to provide an overview of achondroplasia and to explain how it affects bone growth and the body overall.
About Zahra Khumri Zahra Khumri is an individual with Achondroplasia, the most common form of Dwarfism. She is a Computer Engineer and currently she assists as the Administrative Executive to Abdulla Lutfi and Asma Baker. She, alongside Gulshan, have recently started an event company called “Ray of Hope” that empowers People of Determination artists and connects the corporate world to the world of special needs.About this episodeIn this episode Zahra talks about the trials and tribulations of an individual born with Achondroplasia and how she was able to overcome that. She also shares how she started “Ray of Hope”--an event company that empowers People or Determination artists.Tune in for a very inspiring conversation!Quotes"We come in small packages but we have a lot going on in us.""Don't give height so much importance.""Don't pity yourself, don't let your child feel pity at any moment that they are different. Make them very strong individuals, make them realize that those tests should not affect their life, make them realize that you have to be strong in terms of your education.""You have to stop comparing, you have to stop hiding your child in a very sheltered environment, let your child face the challenges, let them move on.""Every journey has its own surprises and learnings to offer." Useful LinksEmail: zahrakhumri@gmail.comInstagram: https://www.instagram.com/rayofhopedxb/Website: https://thematrixgreenpill.com/
Dwarf Tossinghttps://en.wikipedia.org/wiki/Dwarf-tossingRecent Dinklage/Disney Statements onSnow White and the Seven Dwarfshttps://www.npr.org/2022/01/26/1075761231/peter-dinklage-disneyRESOURCESBooksFar from the Tree: Parents, Children and the Search for Identity by Andrew Solomonhttp://andrewsolomon.com/books/far-from-the-tree/Thinking Big: The Story of a Young Dwarf , by Susan Kuklinhttps://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264The Missing Piece by Shel Silverstein– (animated)https://www.youtube.com/watch?v=4gEjCJOzqXcThe Cracked Pot Children's Storyhttps://alltimeshortstories.com/life-the-cracked-pot/AssociationsLittle People of Americahttps://www.lpaonline.orgAmerican Association of People with Disabilitieshttps://www.aapd.comPeopleRebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rightshttps://www.fordfoundation.org/about/people/rebecca-cokley/Judy Heumann, Lifelong Advocate for the rights of disabled peoplehttps://judithheumann.comFOLLOW AND CONTACT JILLIANPodcast:https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385Instagram:@jill_ilana, @alwayslookingup.podcastWebsite:https://www.jillianilana.comEmail:alwayslookingup227@gmail.com
FROM THIS EPISODEAchondroplasiaAchondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means "without cartilage formation." https://medlineplus.gov/genetics/condition/achondroplasia/ Jillian's Disney Project (includes photos)https://cripplemedia.com/waiting-for-my-disney-princess/ Thinking Big: The Story of a Young Dwarf Children's Bookhttps://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264 Little People, Big World TV Showhttps://go.tlc.com/show/little-people-big-world-tlc Nancy Volpe Beringer: Fashion Design for Sustainability and Adaptabilityhttps://www.nancyvolpeberinger.com Little People of Americahttps://www.lpaonline.org American Association of People with Disabilitieshttps://www.aapd.com Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rightshttps://www.fordfoundation.org/about/people/rebecca-cokley/ Maria Town, American Association of People with Disabilities, President and CEOhttps://www.aapd.com/about/maria-town/ Wigs and Wisheshttps://www.wigsandwishes.org FOLLOW AND CONTACT JILLIAN Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385Instagram:@jill_ilana, @alwayslookingup.podcastWebsite:https://www.jillianilana.comEmail: alwayslookingup227@gmail.com
Sasha Albright is a compassionate professional. She is an author, advocate, and educational specialist, with a passion for ending social stigmas surrounding Achondroplasia dwarfism. As the proud mother of a daughter with Achondroplasia, Sasha understands her advocacy as a mandate, challenging current culture to embrace those with differences found outside, of societal norms. Sasha furthers her advocacy as a contributing author to the anthology A Little Perspective: A Special Delivery From Pregnancy To Toddler Hood.https://www.facebook.com/SashaAlbright1213
FROM THIS EPISODEOsteogenesis Imperfecta Osteogenesis imperfecta (OI) is an inherited (genetic) bone disorder that is present at birth. It is also known as brittle bone disease. https://www.hopkinsmedicine.org/health/conditions-and-diseases/osteogenesis-imperfecta Skeletal DisplaysiaSkeletal dysplasia is the medical term for a group of about 400 conditions that affect bone development, neurological function, and cartilage growth, including its most common form, achondroplasia.https://www.hopkinsmedicine.org/health/conditions-and-diseases/skeletal-dysplasia AchondroplasiaAchondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means "without cartilage formation." https://medlineplus.gov/genetics/condition/achondroplasia/ Little People of Americahttps://www.lpaonline.org The Missing Piece – Animated Shel Silverstein:https://www.youtube.com/watch?v=4gEjCJOzqXc The Cracked Pot Children's Storyhttps://alltimeshortstories.com/life-the-cracked-pot/ Crip Camp: The Filmhttps://www.youtube.com/watch?v=XRrIs22plz0 Crip Camp: The Revolutionhttps://cripcamp.com FINDING JILLIAN Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385Instagram:@jill_ilana, @alwayslookingup.podcastWebsite:https://www.jillianilana.comEmail:alwayslookingup227@gmail.com
In this episode, we review the high-yield topic of Achondroplasia from the Pediatrics section. Follow Orthobullets on Social Media: Facebook: www.facebook.com/orthobullets Instagram: www.instagram.com/orthobulletsofficial Twitter: www.twitter.com/orthobullets LinkedIn: www.linkedin.com/company/27125689 YouTube: www.youtube.com/channel/UCMZSlD9OhkFG2t25oM14FvQ --- Send in a voice message: https://anchor.fm/orthobullets/message
Here are the links for everything discussed in Episode 72. Times are also below so feel free to skip around and get to the drugs that interest you. (1:17) FDA approves Voxzogo for achondroplasia (3:58) Livtencity approved for treatment resistant CMV (7:36) New imaging product, Cytalux, approved to help identify ovarian cancer CDC website for COVID information - get boosted!Connect with The Rx Daily Dose:Twitter Instagram YouTube Linkedin WebsiteEmail: therxdailydose@gmail.comConnect with Ian Parnigoni PharmD. on social media:Twitter Instagram Linkedin ★ Support this podcast on Patreon ★
Sideman & Zeze Millz are joined by Likkleman to talk about his experiences growing up as a person with Achondroplasia, his relationship with former manager Bouncer and new upcoming boxing matches. Plus Reggie Yates & Aml Ameen talk about their brand new films and directional debuts, Pirates and Boxing Day.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Join our expert panel in this live virtual symposium on the management and treatment of skeletal dysplasias. Credit available for this activity expires: 10/29/2022 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/961766?src=mkm_podcast_addon_961766
It's the last Friday of the month which means it's time for another segment of Turning the Mic On To here on Is This Thing On Podcast. October is Dwarfism Awareness month and to kick off the month we wanted to bring this topic to light. Emma is joined by her aunt Libby, who's daughter Lennon has Dwarfism. Libby shares some basic knowledge on Dwarfism, specially the form that Lennon has, Achondroplasia, and shares some of her experiences and hopes as the parent of a child with a disability. This episode is super informative and eye opening, and really provides ways that we as a society can be more inclusive to everyone around us. Join us throughout the month of October as wear green and strive to bring awareness to Dwarfism.
EmBRACE IT With Lainie & Estela - Look Good + Feel Good = Living Your Best Life With Disabilities
"Height is just a number, not a limit." These are the words Jillian Curwin lives by as she navigates the world as a little person with dwarfism. Diagnosed with Achondroplasia at birth, Jillian shares her empowering journey growing up in a world not built to her size and how her advocacy work is breaking barriers on the fashion editorial pages of Vogue Italia & Harpers Bazaar. Join us as we ask some BIG questions and share a few brow-raising stories in this fun and eye-opening episode!Follow Jillian on IGVisit Jillian's Blog Listen to Jillian's PodcastLooking for more great tips, hacks, and blogposts? Visit: Trend-Able.comFind more on Charcot-Marie-Tooth (CMT) and patient resources on: HNF-cure.orgFollow us on IG! @embraceit_podcast | @trend.able | @cmtwegotthis
Welcome to Embers and Wind! Guest Ethan Crough states “Achondroplasia is the type of dwarfism I have. And so, in my TEDx Talk, I talk about achondrophobia, which is a made-up thing because occasionally I'll meet people who are afraid of me because of what I am, not who I am. Just the dwarfism itself frightens people which is odd.” About Ethan's passion to educate people about dwarfism “It really got lit 15 years ago when our first child was born because then I knew I was an agent of change and an agent of service to a broader, a bigger cause.” I'm your host, Keith Weedman. In each podcast episode, you will hear stories. These stories will feel like a tender wind blowing on the embers of service that glow within you. In this weekly show, you will learn ideas, kindling for your embers. It will be your choice to utilize the gentle wind to ignite the kindling. In this episode, we talk about how Ethan discovered his passion for teaching. You will learn about dwarfism and achondroplasia and his passion to educate as many people as possible about dwarfism, diversity and inclusion. Ethan talks about his gift as a communicator that he attributes to achondroplasia. He shares that it is uncommon for two, normal height parents to bear a child who has achondroplasia. He shares how much the odds increase when a parent with achondroplasia has a child. Ethan shares about his experience with dwarfism as a minority group that often unintentionally gets excluded from dialogues about diversity and inclusion. He shares stories to make his point. We talk about Ethan's 5-year journey in Toastmasters and how Toastmasters prepared Ethan to deliver his TEDx Talk. We talk about his friendship with Toastmaster Ant Blair and how Ant and Ethan challenging one another resulted in both of them getting onto the TEDx stage. Ethan talks about his work at Cummins Inc. in corporate responsibility and the calling that he felt which led him to transition back into teaching as a full-time Tech Ed teacher for Bartholomew Consolidated School Corporation. We shares that his work experience at Cummins was helpful to Ethan in rewriting the tech ed curriculum to make it a STEM (science, technology, engineering, mathematics) lab. You can contact Ethan through his LinkedIn profile which is listed as the website for this episode. He would be pleased to have a conversation with you if he can help you. You can reach him by email: ecrough@gmail.com. And if you want to watch his TEDx Talk, then click on this YouTube link: https://www.youtube.com/watch?v=jlr3T9uf7iY&t=8s. Hosted on Acast. See acast.com/privacy for more information.
Episode content: 1. Common pediatric fractures 2. Achondroplasia 3. Osteoporosis 4. Osteopetrosis 5. Osteomalacia/Rickets 6. Osteitis deformans 7. Avascular necrosis of bone 8. Lab values in bone disorders 9. Primary bone tumors --- Send in a voice message: https://anchor.fm/zusmle/message
In this episode, we review the high-yield topic of Achondroplasia from the MSK section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets --- Send in a voice message: https://anchor.fm/medbulletsstep1/message
Chandler Crews was born with achondroplasia, a serious, progressive and lifelong condition that is the most common form of dwarfism. In 2010 at the age of 16, she made the choice to undergo a series of limb lengthening surgeries. In 2018, she founded The Chandler Project, a non-profit organisation dedicated to connecting people with achondroplasia resources and community. Chandler joins me to share her personal story of living with achondroplasia, why she made the choice to get limb lengthening surgery and the latest news about the condition and what to expect from the upcoming annual conference.
Chandler Crews was born with achondroplasia, a serious, progressive and lifelong condition that is the most common form of dwarfism. In 2010 at the age of 16, she made the choice to undergo a series of limb lengthening surgeries. In 2018, she founded The Chandler Project, a non-profit organisation dedicated to connecting people with achondroplasia resources and community. Chandler joins me to share her personal story of living with achondroplasia, why she made the choice to get limb lengthening surgery and the latest news about the condition and what to expect from the upcoming annual conference.
Grow Bold with Disability podcast brought to you by Feros Care
This episode of Grow Bold with Disability is growing bold and dealing with bullying and exclusion. And our guest is Yarraka Bayles, an indigenous woman who last year posted a heart-breaking video of her 9-year-old son Quaden who lives with achondroplasia saying he wanted to take his own life after being bullied.
Welcome to another episode of the Modern Moron and in this episode we turn the way back machine on to go all the way back to college. Specifically… actually it's not specific at all, as my guest is my old college roommate. We reminisce about being college freshman away from home, the freedom we had and how much we would cut up and laugh like a couple of 12 years old's having a sleepover… no offense to 12 year old's. We talk about how I used to criticize his hygiene habits and behaviors and how much time he spent in front of the mirror. He used to sway back and forth in font of the mirror while brushing his teeth or primping in general. Why do I bring this up? Because he says that his son does the same thing! In passing he mentions that he also has a condition called Achondroplasia which affects growth of the limbs, spinal column and skull. This condition is more commonly known as dwarfism and in most cases requires multiple very invasive surgeries to cope with this condition, but fortunately his son has not, which leads to a conversation about situations in life that first appear as obstacles many times become opportunities to view the world from a broader perspective. Isn't that nice? All from a guy who likes to sway back and forth in front of the bathroom mirror. My old roommate is very energetic, very passionate, gregarious and bombastic is the word he uses. You won't need to strain to hear us or look at your phone to see if the volume will go up further… it'll be fine. We start off with a short conversation that I almost left out. I was going to leave it out because it's just too juvenile even for this show. We used to have this gibberish language we used to speak that no one understood, no one appreciated and it, to me anyway is a bit embarrassing at how juvenile it was then and obviously is now… but we still do it. It would almost be like listening to a couple of toddlers in a playpen talk to each other even though neither of them has the capability of speaking intelligently. It's when my roommate says the gibberish word “Skurvathur”… I'm embarrassed saying it and I actually spelled it out in a text to him and he texted back with another gibberish word we used to use… a very riveting way to start a hard hitting podcast. “What podcast do you listen to? Well I listen to the true crime podcast, I listen to the conspiracy theory podcast… I listen to Joe Rogan… I listen to Pod Save America and I listen to a couple of senior citizens speak gibberish to one another. Yeah, thank you SO much for listening, but you might want to keep it under your hat if you're at a cocktail party and the subject of podcasts comes up… say you listen to something from NPR or something on finance… makes you sound half intelligent. Also, either I curse more than I realize or my guest doesn't curse at all, but I spent a good deal of time bleeping out my… I'm sorry I had our production staff edit out a lot of my foul language. Sounds more professional. It's my college roommate on the Modern Moron... CLOSE - Isn't it nice to reminisce about the old days? I only played Rugby for a year and I had totally forgotten about all those songs we used to sing after games and now that I think about it, most of those songs were EXTREMELY sexist. There were songs about Dinah and a song about a guy named “Abdul Abulbul Amir” and I don't remember them being very complimentary. There would be a chorus, and during each chorus someone from the team would put their beer stein… or red solo cup on top of their head to indicate they were going to sing the next verse and the song would continue until no one could think of another disgusting verse. Rugby was not played in any high schools back then and I believe a lot of high schools do have Rugby programs now, but I wonder about the after game rituals. Also, it occurred to me that the only way to learn those songs was pretty much through oral tradition. There was no binder full of Rugby songs, there was no website for Rugby songs which by the way yes there is a website for Rugby songs and even recordings of drunken Rugby players singing those songs, they aren't very audible as most of them are slurring their words but isn't the internet… great? Or is it? I do have more from my conversation with my old college roommate and I hope our reminiscing brought back some memories of your post high school or college years. Man that was a long time ago and man do I have so much wisdom and so many opinions I constantly want to impart on whoever is within earshot throughout the day. Fortunately most of the time that only involves my poor dog. Thank you for listening… please forward this to ONE person you think might like this show and another thing about those Rugby songs?... they're a lot more entertaining after about 3 pints. We'll see you next time on the Modern Moron… Conditions and Diseases: Achondroplasia - Johns Hopkins Medical Dirty Rugby Song #1 - YouTube Dirty Rugby Song #2 - YouTube
Lots of zebras that can be relevant for basic science and to some extend for clinical science assessment; the focus will be on molecular pathogenesis and diagnostic features of Achondroplasia, Osteogenesis Imperfecta, Dysostoses and Fibrous Dysplasia including the polyostotic variant McCune Albright; A high-yield discussion regarding differential diagnosis off Cafe-au-Lait macules is offered at the end. (Note: Some resources consider Klippel-Feil syndrome also as part of skeletal dysplasias, however we covered it together with disorders of cervical spine in a different episode)
Pradha is, simply put, a renaissance woman. Her gifts are so broad, looking from one end, the other isn’t visible. Classical Southern Indian Vocalist, artist, author, dentist, medical teacher, medical technology expert, communicator, thought leader. That’s just the start. She was born with a special condition, Achondroplasia. In many areas of the world, this can … Continue reading Ep. 36 – Dr. Lakshmi Pradha – Renaissance Woman →
This episode covers bone fractures in achondroplasia.Written notes can be found at https://zerotofinals.com/paediatrics/ortho/achondroplasia/ or in the orthopaedics section of the Zero to Finals paediatrics book.The audio in the episode was expertly edited by Harry Watchman.
How many times have you seen a little person play just a person in a commercial on TV? Or in an internet spot? If you haven’t seen this before or, you’re not alone. However, Alexia (fittingly pronounced Ah-Lex-Uh) Vassos broke this streak by being featured in an Amazon holiday shopping commercial in the Fall of 2020 - and she played a human person. Alexia talks about what the commercial means to her and how she is striving to appropriately represent the dwarfism community. Thanks to John Lee Dumas for suggesting my subtitle!
What would you do if you were a little person and someone snuck a photo of you to criticize your stature on social media? This situation happened to Kevin Ton. He retaliated in a physical way because he felt threatened and violated. Though he’s normally a collected and rational person, being treated in this inhumane way is hurtful and makes you feel powerless. Kevin discusses the incident and how this treatment can have lasting effects on one’s self-confidence.
For Pancho Moler, skateboarding was the sport where he found himself and felt accepted as a little person. Becoming a sponsored skateboarder and being featured in magazines for his talent made him feel validated. But when the industry decided to treat Pancho like a gimmick, he had to come to terms with being othered on a global level. Pancho talks frankly about shutting the door on his dream career, dealing with substance abuse, and how he transitioned to a new life in the world of acting. Connect with Pancho: IG: @panchomolerp Thanks to John Lee Dumas for suggesting my subtitle!
Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3 rare diseases that are associated with her dads exposure to Agent Orange, a dioxin used while he was serving in the Vietnam War. Her goal is to shed light on those who are struggling with the many debilitating conditions from Agent Orange and other Rare Diseases; to advocate for those who are struggling to find Help, their voice, and are unable to advocate for themselves. TRANSCRIPT s8e10- PodcastDx- Agent Orange Lita T 00:10 Hello and welcome to another episode of podcast dx. The show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita. Ron 00:22 I'm Ron Jean 00:22 and I'm Jean Marie. Lita T 00:23 Collectively, we're the hosts of podcast dx. Our guest today is Tara. She is the daughter of a disabled US Marine Corps veteran who had to leave her position in government health care after falling ill with the first of three rare diseases that are associated with her dad's exposure to Agent Orange. It's a dioxide, Jean 00:48 dioxin Lita T 00:50 used while he was serving in the Vietnam War. Her goal today is to shed light on those who are struggling with the many disabling or debilitating conditions from Agent Orange and other rare diseases, to advocate for those who are struggling to find help their voice and are unable to advocate for themselves. Jean 01:12 Hi Tara. Hi, Tara, Tara 01:14 Hi, Ron 01:16 Tara to give our audience some background on Agent Orange. Birth defects are showing up in children of veterans who served in America's military during the Vietnam War. The mil, the military actually sprayed more than 20 million gallons of the powerful defoliant in Vietnam, Laos and Cambodia to deny the enemy food sources and cover 10s of 1000s of American military personnel handled, sprayed or were sprayed by the herbicide. The chemicals in Agent Orange are known to cause a variety of illnesses including several types of cancers, among other diseases. The list of illnesses tied to Agent Orange is posted on the Department of Veterans Affairs website, and they include and I may struggle with some of these Lita T 02:09 good luck Ron. Ron 02:12 Al amyloidosis. Chronic B cell leukemia, Jean 02:18 leukemia, Lita T 02:19 leukemia, Ron 02:19 leukemia. Told you I was gonna struggle Lita T 02:24 mmhhmm Ron 02:24 Chloracne, Is that right? Lita T 02:26 Well, we could try. Jean 02:27 And actually I was just watching there's a Netflix series on now about spies. And one of the individuals who they attempt attempted to assassinate with dioxins has this and it's very, very it's a very visual type thing you can really you can definitely discern that. That's what that is. Ron 02:48 Wow! There's also Lita T 02:51 diabetes type 2 Ron 02:52 Yep. Thank you Hodgkin's disease, ischemic heart disease, multiple myeloma, also non Hodgkins lymphoma, Parkinson's disease, peripheral neuropathy, at least the early onset of it. Porphyria Cutanea Tarda. I hope I got that right. It also includes prostate cancer and other respiratory cancers, such as lung cancer, cancer of the larynx, trachea and bronchus. Also soft tissue sarcomas other than osteosarcoma, Chandrosarcoma Kaposi sarcoma, or mesothelioma. And a group of different types of cancers in the body tissues such as muscle fat, I'm sorry, muscle, fat, blood and lymph vessels, and also connective tissue. And it took decades for the Department of Veterans Affairs to admit that the powerful herbicide poisoned 1000s of their military members. Jean 04:00 And that's right, Ron, Tara 04:01 Yes Jean 04:01 and the children of the men and women that served and were effected by Agent Orange have a possibility of being you know, like the children might be born with spina bifida that's quite common. And that's a birth defect that occurs while still in in utero, and where the spinal cord fails to close at the bottom. And then children of women that served in the same situation have a larger set of possible birth defects that the VA does recognize. And that's because women are born with the same number of eggs, you know, they they carry those with them their entire lives, whereas men are constantly producing new sperm. Lita T 04:37 Right. And we are going to get to our guest in a minute. Tara 04:40 I know Lita T 04:40 I hate to put you off, but we're just trying to save you some of the background information here, Tara, According to... Tara 04:48 No, I appreciate it. Lita T 04:49 (laughter) That's okay. According to the VA that covered birth defects for children born to women who served in Vietnam and the Korean demilitarized zone. Include. Okay, now it's my turn. Ron 05:02 Exactly Lita T 05:03 Achondroplasia, cleft lip and cleft palate, congenital heart diseases. congenital talipes equinovarus Oh, that's called clubfoot. Okay, I should have just said clubfoot, esophageal and intestinal atresia, Hallerman-Streif or Steiff? stryfe Hallerman-Streiff syndrome, boy Jack's gonna have fun editing this one Jean 05:30 Or Dom Lita T 05:31 or Dominic, whoever gets lucky, Ron 05:33 Dominic's shaking his head no. Lita T 05:34 (laughter) Hip dysplasia, Hirschsprung's disease which is a congenital mega colon, hydrocephalus due to aqueductal stenosis. Hypose, hypospadias, hypospadias. We'll say hypospadias, imperforte anus, neural tube defects, Poland syndrome pyloric stenosis, syndactyly or fused digits. Oh, that's like webbed feet. Is that right? Okay. tracheoesophageal fistula? I did pretty good on that one, undescended testicle. Williams Syndrome, Jean 06:24 and we laughed at the fact that we can't pronounce these things. Lita T 06:27 Yeah, we're not laughing at the disease. Ron 06:30 the sad part about is this agent orange causes all of this. Lita T 06:33 Yeah, Jean 06:33 Right, right Lita T 06:34 Yeah. Jean 06:34 And I mean, Tara, you must have become like an, you know, you have to know so much and learn so much. Because these are things that people normally Lita T 06:44 normally don't even think about Jean 06:45 haven't even heard. Lita T 06:46 It's not in our everyday vocabulary. No. So, Tara, (laughter) back to you. Thank you for taking the time to speak with us today. We really appreciate it. Now, can you start our listeners out by telling us what conditions are you personally dealing with? Tara 07:01 Yeah, well, thank you for having me. I'm really grateful to have this opportunity to speak about this. Because, as you just mentioned, all of those conditions that I'm gonna put in, quote, air quotes recognized as being caused by Agent Orange, there are a slew of other conditions. And along with medical research out there that support connections between Agent Orange and these conditions, although they're not identified as being recognized. I myself have just in the past three and a half years been diagnosed with three of those. The first is a vascular necrosis, which I have in both knees, both hips and both shoulders. A Vascular Necrosis is the the first that I was diagnosed with, which is technically called multifocal, because I have it all over. There are many citations out there that support the association between Agent Orange and a vascular necrosis. And the second diagnosis that I had was intracranial hypertension, which I actually caused me to go blind, Lita T 08:17 Ohh! Tara 08:17 completely blind, and I was never supposed to, I was never supposed to see again, ended up having to have a brain operation and a VP shunt, but that it's a central nervous system disorder that affects your your ventricles, your vessels, which is linked to the agent, orange dioxin similar to spinal bifida, Chiari, which there's literature out there supporting the connection to that as well. Lita T 08:44 MMhhmm Tara 08:44 And the third that I was diagnosed with last year was interstitial lung disease, which causes doctors to ask if I've been around birds. But it's not just me. My sister also gets it. And there is also a slew of research out there showing the connection between respiratory conditions, not just lung cancer, respiratory cancers that are related to Agent Orange. And as recently as July 21 2020. There was a research article on that by is on the VA website for lung diseases, saying that additional research needs to be done for the veteran. So if all this research still needs to be done for the veterans, there's still so much that has to happen just for their descendants, their offspring Ron 09:41 Right, Lita T 09:41 Right, right, because I've heard that it's also being passed on to the grandchildren. So it must be doing something Tara 09:48 Yes Lita T 09:48 in the genetic links, right? Tara 09:50 Yes. Yes, it's multi generational, and it can lie dormant for years like mine didn't. It didn't show up until I was 40. Ron 10:00 WOW! Tara 10:00 yeah. And and my sister, my sister was actually born with webbed feet, which they recognized as one of the Ron 10:09 conditions? Tara 10:09 things that correct that can be passed on to descendants. That and she also has the same lung condition that I have. But so we both have it. Lita T 10:18 Wow Jean 10:19 and dioxins are also found in other areas. I mean, it's something that if you're, you know, say your your family wasn't exposed to Agent Orange, but you know, you should be aware of it, Lita T 10:30 like landscapers, are you saying? Jean 10:31 No, like on paper mills, Oh, there they are found in other areas in in industry. And this actually does kind of hit close to home because, um, Agent Orange was originally developed at the University of Illinois as a means to help grow soybeans. And it wasn't it used it Lita T 10:38 as a chemical weapon Jean 10:42 originally, very low doses, and then the military Lita T 10:53 weaponized it basically. Jean 10:54 Yeah, yeah Lita T 10:55 Well thank you, Tara. I think our listeners have a better understanding of what we're going to be talking about now. Since we only discuss one one diagnosis per episode, we would like to discuss your battle with multifocal avascular necrosis, also known as AVN. Perhaps you're willing to come back on another episode and talk about the other problems individually? Would that be okay? Tara 11:19 Absolutely. Lita T 11:20 Great. So we could make this into like a mini series? Jean 11:24 Yes Yes. Cuz I mean, it's, it's Tara 11:26 absolutely. Lita T 11:27 That would be really, really great. Jean 11:28 Yeah Well, and yeah, we can kind of understand that when you when you volunteer for the military. You know, there's a lot of things that you're going to be exposed to that normal, civilians... Yeah. Lita T 11:28 And I don't know if you're aware of, but Jean and I are both veterans. And we always support any veteran activity that's out there. Because it's also supporting us. Jean 11:49 Actually we just, you know, we were just saying this morning that, you know, the vaccine for COVID is not mandatory, they can't really make it mandatory. However, in the military, it would be mandatory, because you're giving away your life for your country. Tara 12:04 Yeah! Lita T 12:04 However, does that mean you're giving away your children's lives, your grandchildren's lives, this is where this topic is going to be important. Jean 12:12 And there is there is the onus on them to keep their personal safe. Lita T 12:16 Yeah. Jean 12:16 And whenever possible, prevent, you know, disease and illness Lita T 12:20 Right Jean 12:20 that kind of situation, Lita T 12:21 right Tara 12:22 Yep. I completely agree. And oftentimes, you know, the military families, the sacrifices that they make when their loved ones are off serving, or the sacrifices, in this case, their health. So I completely agree. Lita T 12:39 Well, yeah, we never would have expected this type of a reaction based on Agent Orange, but now we're learning Jean 12:47 Yeah. And Tara 12:48 I know, Jean 12:49 Tara, can you tell us? What is AVN? And which bones? You said that you have it? It's multi Lita T 12:55 shoulders? Jean 12:56 Yeah. Shoulders in everything? Can you tell us which exact which joints are affected in your body? Lita T 13:01 And what is it Jean 13:01 in? What is it? Yeah, Tara 13:04 sure. Well, avascular necrosis is It's the result of reduction of the blood flows to the bone. I, I have it in both knees, both hips, both shoulders, which basically means my bones didn't get enough of the blood, which caused them to start to die. And once the bones start to die, they don't just regenerate themselves. Now, here's an interesting fact. I was diagnosed with this three and a half years ago, my dad, the veter... the Vietnam veteran was just diagnosed with that three months ago. And Jean 13:41 Oh my gosh, Tara 13:42 and there's multiple, like I said, there's multiple citations out there of so many other veterans and their descendants, who have also been diagnosed with avascular necrosis. But what it does is as the bone dies, it brings the entire joint with it. So oftentimes, it's missed. It's not diagnosed until it's until at a later stage, which makes it a lot more complex. And it's very hard to find. Lita T 14:14 Does it start out? Yeah, the symptoms as they start out, is it does it feel like a arthritic type of a feeling or how did the symptoms start with you? Tara 14:24 Well, what started interestingly, I woke up one morning and I thought that I had twisted my knee and my sleep. So it felt like a torn ligament in my knee. And I ended up going to the emergency room and I was misdiagnosed with bone cancer. Because Ron 14:44 Oh Wow, Tara 14:45 it Yeah, it looks like bone like white specks all in my bones. Jean 14:52 Mhhmm Lita T 14:52 Ohhh! Tara 14:52 And that's the dead bone marks. They're called bone infarct. So I have that as well as, as the death on the end of the bone, which is the a vascular necrosis too. So that was the initial diagnosis. And I, it took me all over the country, I ended up going to Mayo Clinic in Rochester, Minnesota to trying to find a diagnosis and help, which ultimately landed me in New York City at New York Presbyterian, where I found a doctor to do a bilateral hip procedure on me to try and slow down the progression. Lita T 15:31 Okay Tara 15:32 So, and maybe I should touch more on, I guess, how do you want me to touch more on the connection between avascular necrosis and Agent Orange? Lita T 15:42 Sure, sure. Tara 15:45 Okay, hold on, let me get let me get there, my notes... Lita T 15:49 she that's what Jean was saying. You have to become a expert. Jean 15:53 Subject matter expert I think there should be honorary doctorates. Lita T 15:56 Yes. Jean 15:57 For patients like you. Yeah Tara 15:59 Yeah, you have to you have to be your own, like advocate. And that's the biggest challenge especially says it's considered rare. There's not a lot of doctors who actually have the knowledge that you need. So you get Misdiagnosed, and you get misinformation, which causes you to lose time, and your options for treatment diminish. Ron 16:25 Absolutely Tara 16:25 So hold on one second. Sorry. Jean 16:29 And I think Mayo Clinic is very interesting in Rochester, Minnesota, because the weather gets so cold there. I like to call it mole city. I don't know if they would agree with me calling it mole city Lita T 16:39 (laughter) the tunnel. Jean 16:39 But there's tunnels underground that connect the hospital to like the hotels, the hospital to the grocery store, to the library. So you don't have to go out there. freezing cold Lita T 16:49 It's very nice. It's very nice Jean 16:50 It's unique. It's it's kind of fun. Lita T 16:52 Right? Jean 16:53 And there's little shops all along the route. Lita T 16:55 Yes. Tara 16:55 Okay. Here we are. So the connection with the a vascular necrosis, and Agent Orange. So Avascular Necrosis, like I said, it's a result of the reduction of the blood flow to the bone. And Agent Orange has an adverse effect on blood vessels. So there's medical literature, literature that support Agent Orange, and the dioxin is capable of lying dormant and the effects that it has on the blood vessels. So it's actually the result? Yeah, hold on one second. Lita T 17:32 I know I read the word stenosis and a couple of the different results. Tara 17:37 By patients? Lita T 17:38 Right. So stenosis is is reducing in size, so possibly, the blood vessel size is reduced at the at the bone. Could that be part of it? Tara 17:49 Yeah. It's because it's not getting because of that the blood is not flowing the way that it needs to. Lita T 17:55 Right. Jean 17:56 And I guess most people don't think of their bones as first of all even needing a blood source. Lita T 18:00 Yeah, yeah Jean 18:01 but you don't realize that the osteocytes and, and everything inside your bone that you know that there's constant growth in bone and that it's still... Tara 18:07 I know. Jean 18:08 Yeah, because you think it's like set in stone. But really, it's, you know, part of your living Lita T 18:14 body, Jean 18:14 it's part of your body that's, you know, it's constantly Lita T 18:16 most people don't think about it Jean 18:17 regenerating, yeah. Lita T 18:17 Right, right Tara 18:19 It is. And a lot of people also kind of confused a vascular necrosis, which is also called osteonecrosis, but they confuse it with osteoporosis. Lita T 18:30 Right, right Tara 18:32 Like, Jean 18:32 ohhhh, Tara 18:32 Oh, they're like, you have Ron 18:34 brittle bones? Tara 18:34 osteoporosis. I'm like, it's not osteoporosis. Lita T 18:37 No, no Tara 18:39 It's osteonecrosis. And it's completely different. I went through that, initially, to once I found out that it was the a vascular necrosis, it was very challenging to explain to people actually, what it was, who had assumed that it was osteoperosis, Ron 18:40 Right Lita T 18:40 Different Ron 18:40 Right, right you know, as we're talking, I just, it reminds me and this is going way back, when I was in college, I had done a paper on the banning of chemicals and Agent Orange. Jean 19:14 Mhhmm Ron 19:14 It was done like in the mid 70s, or something like that, because they knew it was bad. They just didn't know how bad Jean 19:22 Mhhmm Lita T 19:22 Oh Wow. Ron 19:22 And this is where the stuff that we're talking about now is the result of all the research from that but way back in the 80s when I did this paper, they knew that this stuff was bad and that's why they said no more of these chemicals. Jean 19:39 Well, it kind of reminds me of lead in fuel. Ron 19:41 Mhhmm Jean 19:42 And you know, like to prove that it was perfectly fine, which it's not the someone actually dipped their hands into it, and then later on, developed all sorts of cancers in both arms. But you know, like we I guess it takes time and research and, you know, you have to think about the effects down the road. Ron 20:00 The long term Absolutely. Jean 20:01 And it's not. Yeah, it's a challenge, Lita T 20:03 right? Tara 20:04 Yeah. And I remember reading somewhere that the amount of chemical that was used over there covered the span of I think it was like Kentucky and another state combined. And it was actually the the combination of the chemicals in Agent Orange. The thing is tcdd tetrachloride benzodioxine, dioxin tcdd. It's the chemical group of compounds named dioxins. And that's what makes Agent Orange as notorious as it is. And it's actually considered the most toxic of all dioxins, which is saying a lot, because dioxins are notoriously toxic. So, yeah, it's, um, I don't know, if you guys watched Chernobyl, that show? Jean 21:01 I haven't seen that one yet. It's on my list. Tara 21:03 Oh, I'm wondering how come they haven't done something like this for Agent Orange? Jean 21:08 That's interesting Tara 21:09 I'm like, yeah, Jean 21:10 yeah. And I've been to see, oh, what has it done to the population? Lita T 21:13 in Vietnam? Jean 21:14 Yeah, in Vietnam? Because, um, you know, it's a long lasting chemical. And it's, yeah, it's got to have long term effects. Lita T 21:22 Right. Jean 21:22 Yeah. And then it's also in the environment at large. Tara 21:25 Yep. And there is actually I've read a lot of things about the effects of the what's happening in Vietnam because of this. It's still being in the soil, so... Jean 21:37 And, and there's probably, you know, if your going to have does have research and information, that's probably a good source as well, because they have a probably a greater population from the exposure. And actually, I think that takes us to Ron's question... Ron 21:50 exactly. Can you tell us how common is a vascular necrosis? And actually, how is it treated? Tara 22:00 Sure, so a vascular necrosis is probably anywhere from 10 to 20,000 people a year are diagnosed with it. So in order to be considered a rare disease, it's 200,000 or less avascular necrosis is 10, to 20,000. Jean 22:20 Okay Tara 22:20 So to treat a vascular necrosis and I need to give a plug here, because a lot of my information, Dr. Michael Mont, at Lenox Hill, who has, I was scheduled to have surgery on both knees, both hips in both shoulders in September of this time here, but due to COVID, and all of that, a couple of other mishaps, I actually kind of got sick with my lungs, too. We're postponing it, but he is phenomenal. He is a avascular necrosis guru, let me say that. So a lot of what I am speaking to is from literature that I've read that he wrote and talks about. So as far as treatments go for a vascular necrosis. As I mentioned earlier, a lot of people don't get a diagnosis until later in stage three, to give a little background on this, there is different staging, I guess, models that are used, there's ARCAT, then if you use the ARCAT, there's ARCO there's four stages, the first two stages are only identifiable on an MRI. So most people aren't going to be if you go to the doctor and you have knee pain or something they're not they're going to do an X ray. And when they don't see anything, it's like I don't, you're fine. Most, a lot of times, you don't go for an MRI for multiple reasons. So you don't get diagnosed until the pain progressed, and it gets really bad. Well, it's during those first two stages, where you have the less invasive procedures that are options that could help prolong you, possibly your bone completely dying and needing total replacements and it's becoming mobility issues, as well. So Another interesting fact here, too, and I'm kind of all over the board, but you know, Lita T 24:29 yeah, you know, it turns out to be like a spider web, you know, one thing leads to another but go ahead and take your time. Tara 24:35 I know avascular necrosis, there are a couple kind of well known people that had it A-Rod had it in his shoulder, Mike Napoli. Oh, the Red Sox play for the Red Sox, but theirs were caught. It was caught really early because they had to go through rigorous physical. So they had really high success. But I can't stress the importance of especially If somebody has history of Agent Orange, and they're having hip pain or something of that nature and their knees, hips or shoulders or something, especially if they have underlying health issues that prompts them to need prednisone or steroids, cause that contributes to that. It's like a perfect storm, Lita T 25:24 okay Tara 25:24 with the agent orange to cause a vascular necrosis. So did I answer your question?, Lita T 25:32 Yeah that makes sense. That makes sense. Right? Tara 25:35 I didn't finish answering the question though, Lita T 25:37 no, that's okay. But at least that gives some background. Right. Right. Tara 25:41 Okay, Jean 25:42 well, yeah. And I think, you know, if you go to, you know, your orthopedist, and I don't think you know, is it typical for them to ask you? So did your parents, you know, serve in Vietnam? Are they exposed Agent Orange, it's, if it's not on their intake information, you really do have to advocate for yourself. Lita T 25:58 Right? So the treatments again, the the initial treatments are, are what? Tara 26:06 Okay, there you go. See, I didn't even answer it. Ron 26:09 (Laughter) Tara 26:09 So there's a there's, there's quite a few different treatments for the stage. And it's a little bit controversial, too, because, because it's rare, and most people don't get diagnosed until stage three and four. That means that there's not a lot of people to actually do tests that are trials on Lita T 26:35 Oh Okay Tara 26:35 stage one and two, or phase, the earlier stages. But very popular and somewhat controversial, depending on who you talk to is a core decompression, where they use bone marrow efforts that stem cells. So what accordi compression is, is they take and drill holes into your bone. And they inject stem cells into the bone marrow in hopes of regenerating the bone. Lita T 27:10 Would they be your own stem cells? Tara 27:12 Yes Lita T 27:13 Okay? Tara 27:13 Yeah, yes. But I also have for earlier stages. Do they also do PRP for protein rich? The Lita T 27:21 plasma Tara 27:22 stem cells? Lita T 27:23 Okay. Okay. Tara 27:25 But as far as treatment for the later stages, and that so.... So why I said it was controversial is because some orthopedist will say that, if you have a core decompression, you're kind of wasting your time, because it might buy you a little time, but you're still ultimately going, it's still going to collapse in the long run. And you're still going to have to go through all of the other things. So why even do the core de-compression? Lita T 27:58 So it's just it's just a temporary Jean 28:01 stop gap. Lita T 28:01 A stop gap Yeah. Ron 28:03 How much time? Jean 28:04 Yeah, Tara 28:06 it varies. And it's not always, that's not always the case, I had the bilateral hip core decompression in January of 2018. And I mean, I had tremendous relief after I did, and so far, like, it's, it hasn't gotten to the point to where I would need like to have it again. Like the pain hasn't gotten to that point to where it was before I had that surgery. So it's but there's other people who have had success and haven't had to go on and have any further surgery. So it's, it's not a, everyone will will have to it's there might be some that do and some that don't. And so the some that that do ultimately have to go on and have it that causes them to say that not to have it I don't know. So it is controversial. Lita T 29:05 Okay Tara 29:06 If you ask anybody, you'll get mixed reviews on whether you should or shouldn't. But the the guru, Dr. Michael Mont will tell you yes. To do the core compression, and I'm right there with him. Lita T 29:18 Okay. Tara 29:19 A majority of the time, I guess it depends there are things that so so let me just kind of say this. There's it depends on how much of the articular surface though, is covered with it has dead bones. Like if there's 75% or more, that has dead bone or if it's less light, so there's so many different, "if that, then that" Lita T 29:47 Right, right. Tara 29:48 And so Lita T 29:48 like with cancer, you know, they treat cancer based on how much progression there is, are they going to use radio radiation or chemo? So I'm sure that they base it based on like, you're saying how bad it has progressed, right? Tara 30:02 Correct, correct? Yeah. But that's for the first on the stage one and stage two, stage three and four get more complex. Jean 30:14 Okay Tara 30:14 So you have a variety of different options depending on, like I said, how much dead bone there is, as well as where it's at, where the dead bone is at. I have dead bone. It's 75% on one side, 85% on the other, my hip, and my knees are actually stage three. And my, my, my right, left shoulder is stage three, my right is stage two. And what that means is that some of the more less, the less invasive procedures, maybe don't have a high success possibility. It doesn't mean that it wouldn't possibly work, shall I say? Does that make sense? Jean 31:04 It does, but is is like a replacement of the joint possibility. Tara 31:15 Is the what I'm sorry, Jean 31:16 can can they replace the joints? Tara 31:19 Yes. But you wouldn't do that until stage later? Well, it depends on how much pain you're having to and a lot of it is derived by it by that. But yes, replacing it is an option. So and let me just explain this. This is the best explanation that somebody gave me on how to explain a vascular necrosis. So a vascular, a lot of people think that a vascular necrosis is like your joint. Something happened because you get a joint replacement. But what's happening is picture like whenever they lay of road, paver road, they lay sand down first and then they lay asphalt on top of it. But as you get a pothole, what happens is that sand settles and as the sand settles, then it pulls that asphalt down. So that's the same thing that's happening with the bone as the bone is dying because that's what a vascular necrosis is, is the bone dying as the dying is pulling down and that's what pulls your joint down and all of that, and it pulls all your ligaments and cartilage down and that's why you had to have all of it replaced. Jean 32:35 So it's like sinkholes in the bone. Okay. Tara 32:38 Yeah. Because your bones they're dying and they're, they're collapsing. And so as it does, it's taking everything with it. Lita T 32:45 It's not just the not just the bone at the joint itself, but could it occur anywhere along the bone? Tara 32:55 Yes, I I actually have it that called bone infarct, I have a vascular necrosis at the ends of my bones. And then I have bone infarct, which is dead bone patches throughout the long parts of my bones to which is where a lot of the the cancer that's where the cancer misdiagnosis came because it looks like that it shows up white in the images. Lita T 33:25 Okay, Tara 33:26 but yes, Lita T 33:27 wow, Jean 33:28 yeah, Tara 33:28 for stage three and four, they have multiple different options, like there's an OATS procedure, a vascular graft procedure, ultimately, yes, a total replacement would be, I guess, that I want to say worst case scenario, but before the meet at that age, is a replacement for your hip would only last 10 years. Jean 33:55 Okay, so they try to hold off. Tara 33:56 Now it's actually lasting longer. Sometimes I think it's different if you have a vascular necrosis because the bones especially if they continue to kind of die after you've had the replacement, Jean 34:09 right? Like after the bone isn't. Lita T 34:12 Right. Jean 34:13 Okay. I was just gonna say this, the shaft of the bone is supporting that joint. And so eventually, like, you'd have to place the shaft and the joint itself. Lita T 34:20 Right So Jean 34:21 and you're Lita T 34:22 Why can't they get to the point where they're actually just solving the cause Jean 34:27 the, stopping the necrosis. Lita T 34:28 Right So in other words, like, Jean 34:30 right, Lita T 34:30 feeding the bone with the blood Jean 34:32 Right, Lita T 34:33 they can't. They can't come up with something where they can actually Jean 34:36 I'm sure somebody's researching it somewhere. yeah. Lita T 34:38 yeah, Ron 34:38 Yep Lita T 34:40 Wow. Tara 34:40 Yeah. No, Lita T 34:41 sorry. Tara 34:41 Yeah. Lita T 34:42 Yeah. Are they? I hate to interrupt you, Tara. But are there are there things that you could do to relieve the symptoms or improve your quality of life as you're going through this, you know, like as a person, not medical, Jean 34:58 as an individual Lita T 34:58 as an individual thank you Jean 35:00 No I think, I think we do want medical. Lita T 35:02 Okay. Alright Tara 35:02 Yeah. Well, I can tell you. I can tell you from research that I did as far as exercise goes, low impacts. aquatics is really good. Lita T 35:15 Okay, Tara 35:15 yoga. Another good thing that I found actually has been tremendous for me. Is is keto. Lita T 35:22 What is keto? Tara 35:25 What I eat. Lita T 35:26 Oh, I'm sorry. Okay. I thought it was a new. I thought it was like a karate. (laughter). Jean 35:32 Okay, okay, stop. Lita T 35:35 I'm sorry. Tara 35:36 No. Keto. So one of the things of one of the challenges is, you know, with your bones, whenever you have a vascular necrosis, it makes it really challenging to be able to work out and get exercise or to go on a hike or things of that nature. Because it's kind of like a tire your bones are, the more you drive, the more your tire wears down. And so with avascular necrosis, it's the more that you walk, the more the bone collapses. Lita T 36:05 Sure, sure. Right. Tara 36:08 And so previous literature, I'd probably have to say and there might be some orthopedics that still recommend it, although I wouldn't. That say non weight bearing, like Don't, don't walk, try and limit your, your walking and as much as possible, because that will prolong the collapse. But what I found changing my eating too has allowed me to drop 36 pounds last year. And Jean 36:37 congratulations, Tara 36:38 when I wasn't able to work out and do those things that I used to love to do, like running. You know, Jean 36:47 do you still run in your sleep in your dreams? Is that just me? . Tara 36:52 You know what I do sometimes from from scary PTSD doctors that I've had from my experiences, but yeah, yes, I'm running. Lita T 37:02 Okay. I'm sorry. Is it my turn? Jean 37:05 Yeah, it's your turn Lita T 37:06 Oh okay (laughter) Jean 37:07 go fish. Ron 37:07 Yeah. Lita T 37:08 What? Tara, what role have your family and friends played in your health care journey? Jean 37:13 Yeah. Especially your sister. Um, Tara 37:17 okay. So, my family has been tremendous. Um, my dad and my mom have been my rock. I don't, I would not have been able to make it without them, which I'm not going to go into, like, my past or anything. But it's, it's different from how I grew up. You know, my dad was fighting his demons with the war. But now, he's, he's my rock. Luckily, with COVID because he was in a war veterans home for the past 17 years. And then COVID happened. And I found out that they weren't allowing their workers to wear masks. And so I had him. Oh, yeah. Yep. Lita T 38:02 Oh! Ron 38:02 What? Wow. Tara 38:05 in April. Yeah, I have that recorded. But anyway, um, Lita T 38:10 what state are you in? Oh, what state are you in? Tara 38:13 I'm in Louisiana, Louisiana right now. So, um, I had him discharged. And so he's been able to be here with me. Although it's been extremely challenging with my stuff, but we've been able to support each other. Lita T 38:31 Support each other Right. Jean 38:32 And it's nice to meet your parents again, as adults, Lita T 38:36 Yes Jean 38:36 you know, to get to know them again. As an adult. Tara 38:39 Yeah, exactly. Yes. And so it's been, um, my family has been amazing. is I don't even know how to say this and dance around it. I probably should have prepared better for that question. Jean 38:57 You could leave in skip it, you can skip it Tara 39:00 Okay, Lita T 39:00 Whatever is comfortable for you. And if you want us to edit this out, we could also edit that part out Jean 39:05 sure. Tara 39:05 Okay, well, let me just say this. I fell into probably one of the darkest places of my life that I've ever been in. I am honestly lucky to be alive. There were days that I didn't know if I would make it if it wasn't my health, bringing me to the brink. My physical health, it was my mental health. And so every single relationship in my life was affected. I'm currently where we stand. My mom and my dad are my support system. And I'm rebuilding everything else. Jean 39:44 Okay. Lita T 39:45 Okay. Ron 39:45 Gotcha Lita T 39:46 All right. Jean 39:47 Yeah. And I talk about mental health and physical health definitely go hand in hand. Lita T 39:51 Yes, for sure. Definitely. Tara 39:53 Absolutely. And when you're fighting for your life, you don't have like a lot of the energy to use On those relationships, so work on those. Lita T 40:03 We understand that Tara 40:03 And so everything is affected, you know, Lita T 40:06 we understand that, yeah. Jean 40:07 And you're in your friends and family have to be very understanding you're not able to do the things you used to do. And they really do have to make an effort. Lita T 40:14 Right? Right. Tara 40:15 Right Lita T 40:15 And some people just can't really put themselves in the shoes of another person that has a chronic illness. Tara 40:23 Right Yes Lita T 40:24 And it's difficult. And, you might have to just excuse them and say, well, it's just not within their Yeah. purview Jean 40:33 Purview?. Tara 40:33 Yeah, wheelhouse Lita T 40:35 right. Right. Right. Ron 40:36 Look, this isn't really part of the script. But I'm just curious in you don't have to answer if you don't want to. Have you been able to see someone or talk to a therapist? Or? Tara 40:47 Oh I have a yes. Yes, Ron 40:50 Okay Tara 40:50 I have. I've had a therapist for probably, like 10 years. Um, who? I call her my life coach, actually. Jean 40:59 Sure. Sure. Ron 41:00 Right Tara 41:00 She's Wonderful. Lita T 41:01 Yeah. Anybody with a chronic illness? It's causing pain on a non stop basis, I think, personally, should consider a therapist, Right I know, Ron 41:11 but people look, view it differently. That's my opinion, But people dance around the question Tara 41:11 Absolutely Lita T 41:17 but personally, Yeah, yeah. My opinion is that it's needed. Jean 41:20 Yeah. Tara 41:20 Yeah, they're, they're such that there is still a stigma, in many ways about therapy and mental health. But honestly, there isn't, even if you don't think that you have a mental health, you know, reason to seek help. We all have things that we could improve on, Lita T 41:39 Sure Ron 41:39 Certainly Tara 41:40 and why, you know, why wouldn't we want to? Lita T 41:43 Right Tara 41:43 That's exactly what a therapist would help you do? You know? So that's just my thoughts. Jean 41:49 Oh absolutely Ron 41:50 Some people have that thought of, these are my feelings I hate for anybody else to know what I'm feeling. I'll just deal with it internally. Tara 41:59 Yeah. Ron 41:59 And, you know, again, I mean, people look at it, people view it, people process it differently. I'm in total agreement with what Lita and Jean Marie and what you're saying about, it's great to talk with someone. But again, because of the stigma and all that a lot of times there's people out there that say, I don't want anybody, Lita T 42:19 right, Ron 42:20 know what's going on, Jean 42:21 But it is coming into play in more. For example, like with organ transplant, getting counseling is not an option. Ron 42:31 Right Jean 42:31 It's a requirement, Ron 42:32 right? Jean 42:33 And because they realize that you really you, you need assistance, and you need some help. Ron 42:37 Right Jean 42:37 And it's a big deal. And I think the more and more we integrate health and take it in is part of the whole health package, the better it is for everyone. Lita T 42:47 Right. Jean 42:47 And this way it reduces that stigma Lita T 42:48 better. If we would have started that way back when medicine started, Jean 42:52 right, Lita T 42:53 and said, mental health and physical health are hand in hand. And if you go to a doctor, and you're being seen for something that's chronic, I mean, if it's something that's that's short lived, and the doctor fixes you, there's probably but if it's chronic, I think that you should automatically say, well, because of this chronic illness, you automatically, you know, should go to Jean 43:14 it should be included, Lita T 43:14 right? It should be included. Tara 43:16 Yep. No, I was just gonna say I think there needs to be like some type of chronic illness case manager, care manager, and whenever somebody is diagnosed, that they're referred to that person, and there's information that is given to them based especially based off of that condition, and it includes all of what you're saying. Absolutely Lita T 43:34 right, right Tara 43:35 because there is a huge gap, in many ways on in chronic illness, especially rare disease like that. I mean, it takes a good year for somebody just to get their bearings for any condition, Lita T 43:52 right to process it Tara 43:53 You want to make it a rare, a rare disease, and then that it adds to it because there's only a handful of people who actually have the knowledge that you need in order to find the treatment that you need. And oftentimes you have to travel extensively. I've had to travel across the country and figure out financially how you were going to afford it. I've had to get extremely creative. I found a lot of my doctors based off of research articles that I've read, because there wasn't actually an organization for my condition. So it there's so much that needs to be done in this this arena. But all of what you're saying would be great, too. Lita T 44:37 Well, that leads me to my next question. Tara, what is the best advice that you've received for coping with a rare disease and what advice would you give to somebody recently diagnosed with a rare disease? Tara 44:52 The best advice that I received was you have to be kind to yourself and take one day at a time and I know that That really, it really sounds cliche, because you hear, you know, one day at a time, but you get so exhausted, trying to just trying to find the most simplest thing. And all you want to do is like, just find the answers. And you can't even find an answer. That won't even get on people who are misdiagnosed. But it's really easy to get discouraged, and you beat yourself up over things. So I think that that was the best advice that I received for coping, and that to surround yourself with people who will help you see a side of you that you can't see, Lita T 45:43 like to bring out the positive from you. Tara 45:45 Yeah, well, that will remind you of the good in you because you're going to be struggling really hard. You're not going to feel like that person at all. Lita T 45:54 Right. Good advice. Ron 45:56 Yeah absolutely. Tara, how can our listeners learn more about you? And also about AVN? And do you have any, any social media accounts out there that you want to share with us? Tara 46:11 Absolutely. Um, can I go back and answer the rest of the rest of that question though? Lita T 46:17 Oh sure, go back, backtrack! Tara 46:19 Okay. Okay. So, um, because what advice would I give to someone recently diagnosed with a rare disease is, I would say, research online to see if there's a nonprofit for that condition. One of the best places that I have found support is on social media support group. Facebook has so many support groups, and specifically about the a vascular necrosis support group. That's where Dr. Michael Mont, the one that the avascular necrosis guru, every two weeks, he goes on, he does a live q&a, invite anybody on that support group to participate and ask him any question that you want whatsoever? Lita T 47:08 I love that Tara 47:08 Send him your Yep, you can send him your, your, your discs, to look at it, develop a treatment plan for you do all of that for free? Like he is? Yeah, it's amazing. So for any rare disease, I don't know. I wish my other conditions had that type of interaction. But the a vascular necrosis support group does and it's amazing. So I would definitely start with support groups. Social media, look for the nonprofit, associated National Organization for rare disease Nord, is a place to start to, that will lead you to any nonprofits, potentially, to finding help. And another option is research articles. That's how I found a lot of the doctors that I've met and saw, but based off of who wrote the research article, though, but that was my advice. Lita T 48:13 Okay, thank you. How can we learn more about you then? Tara 48:17 More about me, I will, I will send you my social media contact information. And I am actually starting next weekend. I'm going to start documenting my journey. Lita T 48:30 Oh good Ron 48:30 Okay. Lita T 48:31 like a blog. Tara 48:31 Yep Lita T 48:32 And a blog. Okay, great. Tara 48:33 Yeah. Yeah. Yeah, on a blog. Lita T 48:37 Excellent. We'll make sure that we put a link for that in our website. Tara 48:40 Yes. Because I want to hopefully, share and hopefully I can help others that have maybe experienced the same things that I have. Even especially with the surgery that I'm going to have to have too Lita T 48:54 To get ready for, great, excellent idea. Thank you very much. Well, Tara, thank you so much for taking the time to join us today. And we're looking forward to speaking with you in the future about the other issues that you're dealing with. So we'll be scheduling, we'll be scheduling other appointments for you in the future. Tara 49:16 Great, and I'm like, I got my first podcast down and there's nowhere to go, only improve. Right Ron 49:22 (laughter) Tara 49:22 like I'm only gonna get much better. Lita T 49:24 Yes, Ron 49:25 Oh you did fine. Don't worry about it yet fine. Lita T 49:28 We're gonna definitely Tara 49:28 I didn't even Lita T 49:31 we're gonna definitely be pushing this episode into our veterans network so that other veterans and children of veterans will be aware of this as well. Tara 49:42 I'm going to too and that's why I was going to ask you guys for your social all your social media Lita T 49:47 Sure yes Tara 49:48 because I'd already created like the post and I want to post it and Lita T 49:52 Great, great Tara 49:53 report although although I'm really reluctant because I so I wrote down all my answer, like I've rehearsed it. A lot of what I said is not even on what I wrote. Lita T 50:04 Okay, alright Ron 50:06 Maybe we should do that Lita T 50:07 (laughter) Tara 50:07 I don't know what happened. I don't know what happened. And I'm like, what I wrote is probably like, a lot better than what I said. And I was like, Oh my God, why did you do that? Lita T 50:16 It always goes that way? It always goes that way. The only reason we use a script is, well, I think it's because of me, I have early onset Alzheimer's. And if I don't have a script in front of me, I forget where we are. I forget who we're talking to, I forget quite a bit. So it keeps me focused. And I think it helps keep us from talking over each other. Because when there's three of us on this side of the microphone, talking to you, it kind of limits how much we're talking over each other. So it helps us Jean 50:48 And I tend to ramble. Tara 50:49 Okay Lita T 50:51 (laughter) Ron 50:51 And I guess I tend to interrupt. Jean 50:53 Yeah. Tara 50:56 So if I tell you that I had the script in front of me, will that scare you? Lita T 51:00 No, Ron 51:00 not at all Jean 51:01 no, no, no. Tara 51:02 Ok Cause I had it in front of me. And I still rambled and went off topic. And I'm like, and I didn't even do it. And I was like, Oh, my God, Ron 51:09 You're all good. Lita T 51:10 I'm glad you did, because it turned out wonderfully. Ron 51:13 Yeah, Lita T 51:13 Thank you very much. Ron 51:14 And actually, we do appreciate you coming on the show this morning and sharing your story with us. Quite interesting to say the least. Lita T 51:22 Oh yeah! Ron 51:23 And I'm sure that all of our listeners out there, learned a lot from this episode. Lita T 51:27 I learned a lot. Jean 51:28 I did too! Ron 51:28 And we're looking forward to having you come on in the future to talk about some of the other conditions that you had mentioned earlier. Tara 51:36 Yeah. And I have like, so I have so much better documentation that I could provide? Lita T 51:44 Well, you know, what you could do is you could send me those links through email. Jean 51:48 We can add them to our Pinterest Page Lita T 51:50 When I when I build the website, I don't know if you're aware of this, but you'll get your own page on our website. And then I put links for everything that you would like, on our on your website page. And this way people Tara 52:03 Awesome! Lita T 52:03 can go right there. Yes, Jean 52:05 Yeah And then we'll have a Pinterest page for you as well. And it'll have direct links to any research that you'd like to cite or any documents or articles. Lita T 52:13 Right, right. Jean 52:16 Awesome, so good because I have all of those, like, I have the whole slew of medical, even research and citations and everything Lita T 52:26 exactly Tara 52:26 and even stuff about Agent Orange, so. Lita T 52:28 Right Very important to include. Yeah, Ron 52:32 right. Right, right. Okay, well, thank you again. If our listeners have any questions or comments related to today's show, they can contact us at podcast dx@yahoo.com through our website, podcast dx.com on Facebook, Twitter, Pinterest, or Instagram. Jean 52:50 And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or a qualified healthcare provider with any questions you may have regarding medical condition or treatment before undertaking a new health care routine and never disregard professional medical advice or delay in seeking you because of something you've heard on this podcast. Lita T 53:09 Till next week.
In this interview with Dr. Downey from the Downey Institute in Sevilla Spain, we discuss 3 different aspects of limb lengthening and deformity correction. We start off with his orthopedic treatment and of the pediatric population especially his expertise in treating clubfoot. Then we discuss limb lengthening for those with forms of dwarfism (ex: Achondroplasia). Finally we discuss his protocols for Stature Lengthening for adult patients looking to grow taller. Podcast Audio Version: Time-Stamps for Interview: 2:10 – Interest in orthopedics 3:20 – Explaining what clubfoot deformity is 5:00 – Treating clubfoot deformity with the Ponseti Method 7:30 – Limb lengthening for kids and their parents 9:15 – Precice plate anticipation 10:10 – Kids who need deformity correction + limb lengthening 11:20 – Stature lengthening for those with Dwarfism (ex: Achondroplasia) 13:00 – Arm lengthening for those with Dwarfism 13:20 – Stature lengthening for Adults 15:10 – ERC malfunction solutions for lengthening patients in Spain 16:15 – Physiotherapy regimen for post-LL 17:45 – Determining patient length while minding safety 19:25 – Preventative measures taken against embolism 20:00 – Cost of Stature Lengthening Procedure 21:30 – Price at the Instituto Downey 22:30 – Housing for lengthening patients 23:15 – Do patients have to stay at center during lengthening 25:00 – Final words Contact Information for Dr. Downey: 1. Website: https://instituto-downey.com/ 2. Instagram: @institutodowney 3. Email: info@instituto-downey.com
BRAD WILLIAMS is a comedian, podcaster and actor. Born with Achondroplasia, a type of dwarfism, Williams has been performing stand up comedy since the age of 19. He has appeared on "Mind of Mencia," "Legit," "Deadbeat," "The Tonight Show with Jay Leno," "Jimmy Kimmel Live!" and "Pit Boss". His first comedy album, "Coming Up Short," was released in 2011, and in his 2015 special "Brad Williams: Fun Size" is Showtime's highest rated special of the year. Williams is a frequent guest on "The Kevin and Bean Show" on KROQ and has performed multiple times at their annual "April Foolishness" show. Williams also hosts the "About Last Night" podcast with fellow comedian Adam Ray, and was a host of the weekday morning radio show on San Francisco's LIVE 105.
BRAD WILLIAMS is a comedian, podcaster and actor. Born with Achondroplasia, a type of dwarfism, Williams has been performing stand up comedy since the age of 19. He has appeared on "Mind of Mencia," "Legit," "Deadbeat," "The Tonight Show with Jay Leno," "Jimmy Kimmel Live!" and "Pit Boss". His first comedy album, "Coming Up Short," was released in 2011, and in his 2015 special "Brad Williams: Fun Size" is Showtime's highest rated special of the year. Williams is a frequent guest on "The Kevin and Bean Show" on KROQ and has performed multiple times at their annual "April Foolishness" show. Williams also hosts the "About Last Night" podcast with fellow comedian Adam Ray, and was a host of the weekday morning radio show on San Francisco's LIVE 105.
"Marriage is hard, but it's not too difficult for God to make it work." Even the best marriages require intentional effort to thrive. So, what happens when a relationship is complicated by dwarfism, discord, and discrimination?Last week, Angela Muir Van Etten talked with Crystal about her passion for raising awareness and advocating for people with dwarfism and disability. Today, Angela is back on the podcast to share her marriage story: how God took two people with numerous challenges and grew them into a faithful couple who have honored him. Standing at 3 feet, 4 inches, Angela and Robert’s common height wasn’t enough to hold their marriage together. When workaholism, a failing business, and a breakdown in communication put their relationship on the brink, they needed help! In today’s conversation, hear where Angela and Robert sought help and how they’ve been able to face life’s challenges head-on with love and faith. Their now 35-year marriage is a truly a picture of God’s power being made perfect in weakness!Learn more about Angela Muir Van EttenRead more about Angela and Robert’s love story in Angela's new book, Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith. Questions or comments? Email Crystal at podcast@joniandfriends.orgSupport Joni and Friends to help make this podcast possible.Follow Joni and Friends on Facebook, Twitter, Instagram, and YouTube.Help other people find this podcast by leaving us a 5-star review! *Joni and Friends was founded in 1979 by Joni Eareckson Tada who in a diving accident was left a quadriplegic at 17 years old. Ministry began as Tada, joined by friends around her kitchen table, responded to letters she received from people with disabilities in search of support. For more than 40 years, the ministry has grown to serve thousands of people impacted by disability worldwide: Joni and Friends has delivered more than 180,000 wheelchairs and Bibles through Wheels for the World and provided Christian care to 63,000 special needs family members through Family Retreats. The organization also equips individuals and churches with disability ministry training and provides higher education courses through the Christian Institute on Disability. For more encouragement, download the Joni and Friends radio podcast in English or Spanish, and view inspirational videos on the Joni and Friends website.www.joniandfriends.org*
"When something is happening that shouldn't be, you look around and think, 'Who’s going to do something?' It's then you realize, 'God’s given me the skills to do this.'"Do you feel compelled to take action when you encounter ignorance and inequity? For Angela Muir Van Etten, she has made it her lifelong mission to raise awareness and advocate for people with dwarfism and disability. Standing at three-feet-four-inches, she a gentle, yet firm voice as she advocates for biblical standards of integrity and justice.As a dual citizen of New Zealand and the United States, Angela qualified as a lawyer and served as national president of Little People organizations in both countries. Today on the podcast, she is sharing her story and how her passion for advocacy has grown. Be encouraged by Angela’s conversation with Crystal and inspired to speak up for integrity and justice! Learn more about Angela Muir Van Etten *October 15th is Joni Eareckson Tada 's 71st birthday! Celebrate with Joni! Questions or comments? Email Crystal at podcast@joniandfriends.orgSupport Joni and Friends to help make this podcast possible.Follow Joni and Friends on Facebook, Twitter, Instagram, and YouTube.Help other people find this podcast by leaving us a 5-star review! *Joni and Friends was founded in 1979 by Joni Eareckson Tada who in a diving accident was left a quadriplegic at 17 years old. Ministry began as Tada, joined by friends around her kitchen table, responded to letters she received from people with disabilities in search of support. For more than 40 years, the ministry has grown to serve thousands of people impacted by disability worldwide: Joni and Friends has delivered more than 180,000 wheelchairs and Bibles through Wheels for the World and provided Christian care to 63,000 special needs family members through Family Retreats. The organization also equips individuals and churches with disability ministry training and provides higher education courses through the Christian Institute on Disability. For more encouragement, download the Joni and Friends radio podcast in English or Spanish, and view inspirational videos on the Joni and Friends website.www.joniandfriends.org*
In this episode, join Anthony and Juliet as they dive into Achondroplasia and some of the challenges faced by little people. Tune in for the biology and fascinating history including ancient gods and Neanderthals.
How is Charli Adams coping with the chaos of parenting during a pandemic? In this episode of Coping with Chaos, Sean sits down with this motivational speaker and powerhouse social media influencer to discuss her parenting journey through the COVID crisis. They talk about what's worked to calm their nerves, the importance of focusing on the positive, and how to maintain a healthy relationship through this pandemic - both with your partner and yourself.
Joakim Björkman was born with Achondroplasia (short stature). He is one of the top players on the European and US Disabled Tours. He joins Ben and Chris to discuss overcoming challenges and what it takes to play golf at a high level.
Kelly Stuckey is the owner of Crown Beauty Bar in Fayetteville, Arkansas. For years Kelly and Zac Stuckey put all of their efforts into their business and raising their son Everett who has Achondroplasia, a common form of dwarfism. But in the Fall of 2019, Zac was tragically killed in a motorcycle accident on his 41st birthday. In this episode, Kelly talks about what it's been like making some of the most difficult business decisions ever amidst Covid-19. She shares what she's learning in this time, how she's raising her son, and the power of acknowledging our emotions. You can follow Kelly here: Instagram.com/hellokellystuckey | Learn more about her business and how you can support her at www.crownbeautybar.com Connect with Justin: Instagram.com/kellerthinks | Twitter.com/kellerthinks | fb.com/kellerthinks | Text "BRILLIANT" to 33777 to sign up for the weekly Fight For Brilliance email.
Joakim Björkman är en av världens mest framgångsrika handigolfare. Han föddes med Akondroplasi – är kortare än de flesta av sina vänner – och in i ett liv där han inte var som alla andra. Men det har inte stoppat hans kärlek till spelet golf.När Martin sätter sig ned med Joakim berättar Joakim om hur golfen lyft honom ur en djup depression och hur han en vacker dag hoppas tävla mot "vanliga" Europatourstjärnor som exempelvis Henrik Stenson. Han berättar också om hur mycket just Henrik Stenson betytt för handigolfen och honom själv personligen.Luta dig tillbaka och låt dig inspireras av en resa som varit både lång och brokig – men där Joakim hand i hand med golfen kommit ut på andra sidan som en vinnare.Joakim Björkman is one of the world's most prominent handi-golfers. He was born with Achondroplasia – he is shorter than most his friends – and into a life where he is not like most others. But this hasn't stopped his love for the game of golf.When Martin sits down with Joakim, Joakim tells a story of how golf pulled him out of a deep depression and how he one day hopes to compete against "regular "stars on the European Tour, such as Henrik Stenson. He also explains the impact Henrik Stenson has had on the game of handi-golf and himself on a personal level.Relax and let this journey, which has not been an easy one, inspire you.OBS! This episode is in Swedish.
Quaden Bayles, 9, was born with Achondroplasia dwarfism. The outpouring of support was inspired by a heart wrenching video his mother posted of Quaden crying in the family car after another child at his school mocked him for his height. “I wish I could stab myself in my heart,” Quaden says through tears in the clip. “I want someone to kill me.” Yarraka Bayles originally shared the video to illustrate the effects of bullying and to get parenting advice from others. “I want people to know, this is the effect bullying has,” she says in the video. “This is what bullying does. All it takes is one more instant, and you wonder why kids are killing themselves.” The clip has been viewed more than 15 million times since Bayles uploaded the video on Tuesday, rallying encouragement from across the globe.
During this week's episode of The PHG Podcast, I had the pleasure of interviewing a little person. My guest, who is three feet, ten inches tall, talks about her journey with Achondroplasia, the most common form of dwarfism. We talked about some misconceptions of little people, derogatory terms that you shouldn't use, and whether she feels reality tv shows with little people are helpful or harmful. To become a patron of The PHG Podcast, please visit https://www.patreon.com/thephgpodcast For merch and book list, please visit https://www.thephgpodcast.com/merch To purchase transcripts, please visit https://www.thephgpodcast.com/transcripts To subscribe to The PHG Podcast on Youtube, please visit https://www.youtube.com/channel/UCDyx3xxt3bc55ApyuUc3hEw This episode is brought to you by: Ebone' Beauty Ebone' Beauty is a place where you can enhance your natural beauty. Celebrities such as Robin Givens and Ashanti have been seen in Ebone' Beauty. Use code PHG10 to receive 10% off your first purchase at www.ebonebeauty.com Have A Story to Share? The Professional Homegirl is a women's lifestyle platform that promotes balance between personal and professional growth while becoming the best version of herself. Have an inspiring and/or informative story to share on The PHG Podcast? Please submit your story at hello@thephgpodcast.com Website: www.thephgpodcast.com Social Media Info: Instagram: The Professional Homegirl- @theprofessionalhomegirl The PHG Podcast- @thephgpodcast Ebone' Beauty- @ebonebeauty Twitter: The Professional Homegirl- @thephg_ Use hashtag #thephgpodcast on Instagram and Twitter so I can find ya! Don't forget to rate and review below!
In this episode Kevin shares part of his story living & growing up with Achondroplasia.
In this episode I chat with Lisa Walsh, known as MySmallWonder on social media. Lisa shares her families experience through her daughter Keevas limb lengthening surgery this past year. Keeva was born with Achondroplasia, known as Dwarfism. We chat all things strength and resilience, the positives and the negatives, the successes and the challenges they have as a family living in a world that physically and very often emotionally will not adapt to Keevas needs and her activism as a mother who would like to change that. I really enjoyed chatting with Lisa. Her compassion and strength of character shine through her words. She is every bit my kind of kick ass woman who refuses back down. Enjoy. *Apologies for the sound glitches. Issues in the studio this week.*
Cheyanne Stonesifer was the first little person to compete in the Miss Maryland USA Pageant. Cheyanne grew up watching the pageant and dreamed of someday competing despite having been born with dwarfism. She recently realized that dream and hopes to inspire others with the message that beauty comes in many different forms.
In this weeks episode of Kiwi Birth Tales I speak with Olivia Hewetson who takes us through her two birth stories with sons Beau & Leo. Olivia spends time taking us through her pregnancy and birth with Leo as everything was tracking as it should have been until a 41 week growth scan showing abnormalities in growth with her baby. They were told it was extremely likely Leo would have a form of Dwarfism and the rest was left unknown until Leo was born. Olivia was induced on the same day and after an 8 hour labour Leo was born, his form of Dwarfism was Achondroplasia. Olivia takes us through processing this information at 41 weeks, how they got the information and help they needed once Leo was born and also gives great insight into their lives which were changed forever, but in the most positive way. Olivia is an amazing mum, advocate for people with differences and is always willing to chat with anyone so I encourage you to check their lovely family out on Instagram @olivia_hewetson
Cassie McKee is Kimi's cousin and one of the people Kimi looks up to most in her life (and not just because Cassie is a world class bedazzler). Cassie has a form of dwarfism called Achondroplasia, which her husband and kids have as well. In this episode, she opens up to Kimi about what it's like living as a family of little people in an average sized world, genetics, parenting, and why she has made it her mission to meet strangers' curiosity about her and her family with open, honest dialogue and a warm, friendly smile. Are you following us yet on social? Find us on Instagram and Facebook @allthewiserpodcast. We're also on Twitter at @allthewiserpodHave an incredible story that we MUST hear? Email us at hello@allthewiserpodcast.comWe love hearing from you! See acast.com/privacy for privacy and opt-out information.
A conversation with Fatima Timbo who has a condition named Achondroplasia known as a type of dwarfism. We discuss the development of her mindset and her journey to self-love, confidence and modelling.
In this episode, we review multiple choice questions related to the high yield topics of Achondroplasia & Infectious Diseases in Athletes. --- Send in a voice message: https://anchor.fm/orthobullets/message
In this episode, we review the high-yield topic of Achondroplasia from the Pediatrics section. --- Send in a voice message: https://anchor.fm/orthobullets/message
Pulmonary and sleep issues in children with achondroplasia
Becky Curran is the Disability Equality Index (DEI) Director at Disability:IN, where she is responsible for managing the overall DEI program. Born with achondroplastic dwarfism, Becky talks about her life & career as an advocate for increasing disability inclusion, including: Her childhood health challenges and experiences with social exclusion The importance of her support system of family, friends and doctor How she navigated through multiple challenges to forge her own career path in the media and entertainment industry, to improve the representation of disability in the media and advocate for actors with disabilities Why she started sharing her own story publicly, and the impact that her public speaking is having on individuals and corporations Why she’s comfortable with people coming up and asking questions about her appearance and about her life as a little person You can contact Becky on her website www.BeckyMotivates.com and learn more about her motivational public speaking and her story. Becky’s full bio: Becky Curran serves as the Disability Equality Index (DEI) Director at Disability:IN. In her current role, she’s responsible for managing the overall DEI program. Becky received her Bachelor of Science in Marketing from Providence College, where she gained a passion for influencing change behind the scenes in the entertainment industry. Upon graduation and after 100 job interviews, Becky started working in the Entertainment Marketing department, followed by the Comedy Touring department, at Creative Artists Agency, the world’s leading entertainment and sports agency. Five years later, she worked at CBS Television Studios, where she assisted with the casting of pilots and television series. During this transition, she also served as the Marketing Director and Co-Founding Board Member of the Catalina Film Festival. She also founded DisABILITY In Media, which focuses on positive disability inclusion storytelling through social media. After her six and a half years of working in the entertainment industry, Becky launched a public speaking business. A prolific public speaker and advocate for disability inclusion on a global scale, she has spoken at over 100 venues, including schools, corporations, nonprofit organizations and government agencies, throughout the United States and Kenya. She’s really passionate about disability inclusion in schools, the workplace, and everywhere else. More recently, she spent three and a half years working in the Equal Employment Opportunity (EEO) & Diversity department at Screen Actors Guild-American Federation of Television and Radio Artists (SAG-AFTRA), the world’s largest entertainment union. At SAG-AFTRA, she supported the implementation of a national diversity plan of action to achieve accurate representation of those groups historically excluded from the entertainment and news media. Becky serves on the Board of Advisors for the National Center For Disability Journalism (NCDJ) at Arizona State University.
Episode: 2019.5.2The Living Full Out Show with Nancy Solari wants to show you how you can build a legacy as you live full out. Perhaps you’re faced with a situation where you’re going through the motions and feel unsatisfied with your life. Maybe you have anxiety about what you will do for a career and whether you’ll find the right relationship. This kind of emotion can cause excessive worry. By staying in the present, taking each day at a time, and being your most productive self, you’ll be on your way to finding inner harmony. Our first caller, Christina, is having communication issues with her significant other. Christina asks Nancy for advice on how she can strengthen her interactions with her boyfriend. Listen as Nancy suggests to Christina to ask him to paraphrase back what she says. This will give Christina clarity on if he understands her. Our next caller, Maria, is having trouble with her mobile home manager setting painting requirements. She seeks advice on how to deal with her landlord treating her unfairly with threats of a 30 day notice. Hear how Nancy suggests that she be her own investigator by turning to written paperwork to defend her case rather than have a verbal disagreement. Our Inspirational guest, Nic Novicki, is an actor, comedian and filmmaker who was born with Achondroplasia or dwarfism. He has starred in numerous acting roles on TV shows like The Sopranos, Boardwalk Empire, and Saturday Night Live. Hear how at the height of 3’10 he has pursued a large vision of creating with Easterseals a film challenge.Our next caller, Eden is going through a break up and needs advice on how to overcome her feelings of sadness and depression. Listen to hear how Nancy relates her own stories to Eden of how she reached out to her exes to get feedback on what went wrong and to avoid putting blame on herself. With hard work and productivity you can have a strong sense of purpose. Consider what you’re passionate about and the legacy you would like to leave behind. When you achieve your goals, you will have an everlasting impact as you live full out.
Episode: 2019.5.2The Living Full Out Show with Nancy Solari wants to show you how you can build a legacy as you live full out. Perhaps you’re faced with a situation where you’re going through the motions and feel unsatisfied with your life. Maybe you have anxiety about what you will do for a career and whether you’ll find the right relationship. This kind of emotion can cause excessive worry. By staying in the present, taking each day at a time, and being your most productive self, you’ll be on your way to finding inner harmony. Our first caller, Christina, is having communication issues with her significant other. Christina asks Nancy for advice on how she can strengthen her interactions with her boyfriend. Listen as Nancy suggests to Christina to ask him to paraphrase back what she says. This will give Christina clarity on if he understands her. Our next caller, Maria, is having trouble with her mobile home manager setting painting requirements. She seeks advice on how to deal with her landlord treating her unfairly with threats of a 30 day notice. Hear how Nancy suggests that she be her own investigator by turning to written paperwork to defend her case rather than have a verbal disagreement. Our Inspirational guest, Nic Novicki, is an actor, comedian and filmmaker who was born with Achondroplasia or dwarfism. He has starred in numerous acting roles on TV shows like The Sopranos, Boardwalk Empire, and Saturday Night Live. Hear how at the height of 3’10 he has pursued a large vision of creating with Easterseals a film challenge.Our next caller, Eden is going through a break up and needs advice on how to overcome her feelings of sadness and depression. Listen to hear how Nancy relates her own stories to Eden of how she reached out to her exes to get feedback on what went wrong and to avoid putting blame on herself. With hard work and productivity you can have a strong sense of purpose. Consider what you’re passionate about and the legacy you would like to leave behind. When you achieve your goals, you will have an everlasting impact as you live full out.
Megan, her husband, and new baby girl are Little People. They all have a form of dwarfism called, Achondroplasia. Megan's journey into motherhood was met with lots of resistance from many different sources, along with the possibility that they could pass on a deadly form of dwarfism to their unborn baby. From spending the first 3 weeks of baby Lily's life in NICU to being displaced for a time during the terrible Northern California Fires, their journey has been met with grace and simplicity. Links to guest: https://www.instagram.com/mrsmeganlittle/?hl=en https://www.facebook.com/imeganallyce https://www.amazon.com/Hatch-Baby-Night-Light-Machine/dp/B06XMRCC94/ref=sr_1_1_a_it?ie=UTF8&qid=1543870677&sr=8-1-spons&keywords=hatch+sound+machine+baby&psc=1&smid=A1B0SNM6GS2UL9 https://www.amazon.com/HALO-SleepSack-Micro-Fleece-Swaddle-Small/dp/B001D4951C/ref=sr_1_12_s_it?s=baby-products&ie=UTF8&qid=1543870720&sr=1-12&keywords=swaddle+blanket Connect with us on Mommispace! Instagram | Facebook | Merch | Email If you like this podcast please share with your friends and be sure to leave us a Rating & Review on iTunes!
Roy talks with Joashua Krohn, father of Dallin Krohn, about cruel theft of his son's specialized bike. Dallin has achondroplasia, a form of dwarfism, and his bike had been modified for him. Riding it was one of his favourite activities. If you know who where the bike is, all the Krohn familys is asking for is its return. Subsribe to The Roy Green Show Podcast on Apple Podcasts or wherever you find your favourite shows, for more Canadian stories. See omnystudio.com/listener for privacy information.
Kelly Stuckey is a mama, hairstylist and small business owner. She's made her dreams come true through hard work and dedication to her faith. Kelly and her husband Zac co-own a salon and spa called Crown Beauty Bar in Fayettville, Arkansas, where Kelly hopes to encourage other women to embrace their own unique beauty, rather than those set forth by the world. Kelly is doing the beauty business DIFFERENTLY, and in a secular space, treating her work as sacred, which I totally love. She's also advocating like a mother for her sweet son, Everett, who was born with Achondroplasia, the most common form of dwarfism. I know you'll love hearing from this powerhouse mom on all the things! Oh, but DON'T call her a girlboss ;)
Rebekah and Chris have Achondroplasia, a form of Dwarfism. They have 2 children, one that has Dwarfism, and one that does not. Rebekah and Chris open up about what it's like living as a little person, and how they feel now that they have a daughter with the same condition. Rebekah is a great resource to parents who receive a Dwarfism diagnosis for their child.
When their son is born with Achondroplasia, Kelly and Zac rely on God for comfort and strength in order to find peace with their new family dynamic.
On this episode of the Journeywomen podcast I had the joy of chatting with Kelly Stuckey about beauty and how it relates to our spirituality. Kelly is a follower of Christ, wife to Zach, momma to Everett, small business owner, beauty industry educator, hairdresser, and makeup artist. She recently made the transition from doing hair full-time to being a mom and focusing on the growth and leadership of her team at Crown Beauty Bar. Prior to having her son, Everett, Kelly and Zac struggled with infertility. Kelly shares how her view of beauty expanded when they found out that Everett has the most common form of dwarfism, Achondroplasia. This journey changed her perspective on beauty and taught her to accept that all people are made in the image of God. As someone who tends to take things too seriously, my lightbulb moment with Kelly happened towards the end of our interview when she said that experiencing beauty should be fun! Duh! I can’t believe I didn’t think of that myself. I hope ya’ll find our conversation as enjoyable as I did. As mentioned, you can find out how to connect with Kelly in the show notes on www.hunterbeless.com. Be sure to drop by her social media accounts, Crown Beauty Bar or Crown Uptown in Fayetteville to let her know what you learned from our chat today!
This bonus episode we review Achondroplasia. References: Yap P, Savarirayan R. 2016. Emerging targeted drug therapies in skeletal dysplasias. Am J Med Genet Part A170A:2596–2604. Hunter AG, Bankier A, Rogers JG, Sillence D, Scott CI. Medical complications of achondroplasia: a multicentre patient review. Journal of Medical Genetics. 1998;35(9):705-712. Welcome to TalkingMed, the podcast where we discuss current medical news. Contact: talkingmedpodcast@gmail.com Twitter: @TalkingMedPod Song credit: Night Owl by Broke For Free from the Free Music Archive, used under CCBY Attribution License, modified from the original. Disclaimer: The information presented on this podcast are our own personal views, opinions, and research on the subject matter and do not represent those of our institution or our department. Anything discussed on this podcast should not be considered medical advice. Please contact a professional if you have any medical concerns. All content found on TalkingMed, including text, images, audio, or other formats were created for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have learned it from TalkingMed. Under no circumstances shall Vivek, Stephen, TalkingMed, any guests or contributors to the podcast or blog, or any employees, associates, or affiliates of TalkingMed be responsible for damages arising from use of the podcast or blog. This podcast or blog should not be used in any legal capacity whatsoever, including but not limited to establishing “standard of care” in a legal sense or as a basis for expert witness testimony. No guarantee is given regarding the accuracy of any statements or opinions made on the podcast or blog. You hereby acknowledge that nothing contained on TalkingMed shall constitute financial, investment, legal and/or other professional advice and that no professional relationship of any kind is created between you and the TalkingMed. You hereby agree that you shall not make any financial, investment, legal and/or other decision based in whole or in part on anything contained on TalkingMed. Nothing on TalkingMed or included as a part of TalkingMed should be construed as an attempt to offer or render a medical opinion or otherwise engage in the practice of medicine. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately. The content may contain health- or medical-related materials or discussions regarding sexually explicit disease states. If you find these materials offensive, you may not want to use this content.
When doctors first told Leslie that her daughter was measuring small, she didn’t put too much thought into it. She was told the same thing with her son, who was born perfectly healthy. However, after seeing a different doctor, he told her that her daughter would be born with achondroplasia, a form of dwarfism. Leslie shared her struggles with coming to term with the diagnosis and now 4 years later, what a blessing Lilah is. Devastation Turns to Happiness and Joy Blowing off doctor’s findings With her first pregnancy, Leslie was told that her son was measuring really small. They were concerned that he had IUGR or intrauterine growth restriction. He was monitored very closely and when he was born, they said, “Oh, we were wrong. He is perfectly fine and healthy.” During the pregnancy of Lilah, Leslie was told the same thing. She said, “..they started telling me the same thing around the same time, ‘She’s looking small, your measurements are a little off, you’re measuring small’..and so forth, and I literally just blew it off. Finding out your daughter has achondroplasia They recommended that she do some stress tests and some additional ultrasounds. In the meantime, they moved and switched doctors. She said, “So we went to my new doctor, so we did the ultrasound and the ultrasound tech took a very long time..I, at the time, was just really annoyed because my two-year-old was running around and she was taking a really long time.” When her ultrasound was finished, her doctor sat her down, placed a box of tissues near her and told her, “Leslie, I think your daughter is going to be born with dwarfism.” Knowing her history with her first pregnancy. She tried to explain that he was wrong. Mid-sentence he told her, “I’m 99% sure.” Fear of the unknown “I really was afraid because I just didn’t know much about it. It was a huge unknown for me, and fear of the unknown, you know there’s always questions and you worry about what you don’t know.” Leslie said. Leslie and her husband started wondering about what Lilah’s life would look like. They were concerned about her quality of life, if she would survive birth, or if she would get bullied. She said, “..the biggest emotion I had right away was just fear. I was really scared, it was really just a dark day for us, we cried a lot. We were really emotional and just frightened for our daughter.” Miracles surrounding birth The morning of her planned C-section it was the first snowfall of the year, Leslie said, “..so we woke up to all of this snow, and it was just like everyone’s blessing being poured down on us. It was so surreal.” The delivery of Lilah went better than anticipated. They thought Lilah was going to be born under five pounds and would have to spend time in the NICU. Lilah was born weighing almost six pounds and was able to avoid a NICU stay. While recalling the details of her birth to her mom, Leslie said, “You know mom, I knew everything was going to be okay when I saw all of the nurses smiling, they were all smiling..That day we were very blessed and there were so many more souls in that room than just those nurses, and it was an incredible day.” Achondroplasia There are 200 different forms of dwarfism, achondroplasia is a genetic condition that affects the growth of the bone in the cartilage of the growth plate. Some of the symptoms related to achondroplasia are: shortened arms and legs, large head size, bowed lower legs, flat feet, poor muscle tone and loose joints, and delayed developmental milestones. An official diagnosis for achondroplasia can only be done by genetic testing. During her pregnancy, Leslie opted out for an amniocentesis. When Lilah was born, she was tested and officially diagnosed with achondroplasia. Fear of what other people thought In the four years that Lilah has been alive, Leslie described the hardest part of taking care of her was the six weeks before she was born. Both her husband and her feared the social implications of havi...
00:16 – Welcome to “Software Eats Human…” …we mean, “Greater Than Code!” 01:25 – Travis’ Superhero Origin Story Retinitis Pigmentosa (https://www.blindness.org/retinitis-pigmentosa) Achondroplasia (https://en.wikipedia.org/wiki/Achondroplasia) 09:00 – Explaining a Disability and Limitations to Others The Spoon Theory by Christine Miserandino (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) 14:25 – Supporting Someone with a Disability 19:56 – “Are you noticing your disabilities misrepresenting you in some ways?” – James Edward Gray II (https://twitter.com/jeg2) / Accessibility re: Accessibility “We need to have diverse people working for us so we can bring up, ‘Hey! This thing is an issue!’” @travisbhartwell— Greater Than Code (@greaterthancode) November 30, 2016 Do they all look like me? Do they all think like me? If they do, you’re probably not getting the perspective that you need @travisbhartwell— Greater Than Code (@greaterthancode) November 30, 2016 30:29 – “I have a Buddhist friend with Marfan syndrome who has told me that the knowledge he could die at any time has been tremendously beneficial to his practice, and I sometimes wonder if I wouldn’t be a shallow asshole if I didn’t have my own stuff I’m dealing with. On that note, I’d be curious if you have any thoughts on how your disability and health challenges have positively impacted your life?” – Ryder Timberlake (https://twitter.com/rydertimberlake) 32:10 – Coping Mechanisms and Defining Yourself By Your Work (Question from Craig Buchek (https://twitter.com/CraigBuchek)) 34:20 – “What’s a non-programming hobby you’re into?” – Ben Hamill (https://twitter.com/benhamill) 36:10 – “What’s one thing you wish unknown strangers you encounter in public knew about you?” – James Edward Gray II (https://twitter.com/jeg2) Stella Young: I’m not your inspiration, thank you very much (https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much) Reflections: Astrid: Being cognizant if there’s a way to make your own code and applications more accessible to others. Coraline: Thinking about The Spoon Theory and how it’s been appropriated by the activist community. Mandy: Have empathy for both yourself and others, find your community, and disability is different for everyone. Travis: Gaining empathy for other people to help other people gain empathy for other people. This episode was brought to you by @therubyrep (https://twitter.com/therubyrep) of DevReps, LLC (http://www.devreps.com/). To pledge your support and to join our awesome Slack community, visit patreon.com/greaterthancode (https://www.patreon.com/greaterthancode). To make a one-time donation so that we can continue to bring you more content and transcripts like this, please do so at paypal.me/devreps (https://www.paypal.me/devreps). You will also get an invitation to our Slack community this way as well. Amazon links may be affiliate links, which means you’re supporting the show when you purchase our recommendations. Thanks! Special Guest: Travis B. Hartwell.
BRAD WILLIAMS is a comedian, podcaster and actor. Born with Achondroplasia, a type of dwarfism, Williams has been performing stand up comedy since the age of 19. He has appeared on "Mind of Mencia," "Legit," "Deadbeat," "The Tonight Show with Jay Leno," "Jimmy Kimmel Live!" and "Pit Boss". His first comedy album, "Coming Up Short," was released in 2011, and in his 2015 special "Brad Williams: Fun Size" is Showtime's highest rated special of the year. Williams is a frequest guest on "The Kevin and Bean Show" on KROQ and has performed multiple times at their annual "April Foolishness" show. Williams also hosts the "About Last Night" podcast with fellow comedian Adam Ray, and was a host of the weekday morning radio show on San Francisco's LIVE 105.
A primary cause of dwarfism is a medical condition called Achondroplasia, a type of skeletal dysplasia. Joint pain, nerve compression, and early degenerative spine changes often cause pain in little people, which is under appreciated and poorly managed. We’ll find out how Dee Miller, a little person, has moved past serious spinal pain and spinal … The post Pain in Little People appeared first on Dr. Paul Christo MD.
Why scratch your head if you don't know the answer? What about the Earth made the dinosaurs so big? Why does the Universe spin? Is the Sun seem brighter in the morning than the evening? Are autistic people particularly at home with computers? Why do effervescent tablets fizz only in water? Why do Parkinson's patients sleepwalk without difficulty? Plus, news of a decoy molecule that can treat dwarfism and what earwax has revealed about blue whales... Like this podcast? Please help us by supporting the Naked Scientists
Why scratch your head if you don't know the answer? What about the Earth made the dinosaurs so big? Why does the Universe spin? Is the Sun seem brighter in the morning than the evening? Are autistic people particularly at home with computers? Why do effervescent tablets fizz only in water? Why do Parkinson's patients sleepwalk without difficulty? Plus, news of a decoy molecule that can treat dwarfism and what earwax has revealed about blue whales... Like this podcast? Please help us by supporting the Naked Scientists
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