Podcasts about ehlers danlos syndrome

Group of genetic connective tissues disorders

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Best podcasts about ehlers danlos syndrome

Latest podcast episodes about ehlers danlos syndrome

Hypermobility Happy Hour
62 - Camille Schrier on Advocacy, Awareness & More

Hypermobility Happy Hour

Play Episode Listen Later Jan 31, 2023 65:49


On this episode, Camille Schrier returns to talk about her life as a pharmacy student and her continuing advocacy efforts regarding Ehlers-Danlos Syndrome. Camille graduated with honors from Virginia Tech in 2018 with dual Bachelor of Science degrees in Biochemistry and Systems Biology. She is currently pursuing a Doctor of Pharmacy degree at Virginia Commonwealth University. In 2019 Camille earned the title Miss Virginia after performing a science experiment (the catalytic decomposition of hydrogen peroxide) as her onstage talent. In December 2019, Camille was named Miss America 2020, again after showcasing her science skills. Camille also provides STEM outreach via Her Royal Scientist. Links: https://www.camilleschrier.com

BetterHealthGuy Blogcasts
Episode #179: Genomics with Dr. Sharon Hausman-Cohen, MD

BetterHealthGuy Blogcasts

Play Episode Listen Later Jan 30, 2023 107:50


Why You Should Listen:  In this episode, you will learn how the role of genomics in complex, chronic conditions. About My Guest: My guest for this episode is Dr. Sharon Hausman-Cohen.  Sharon Hausman-Cohen, MD is the co-founder, Chief Science Officer, and Medical Director of IntellxxDNA™.   Dr. Hausman-Choen has been using genomics for over a decade to deliver personalized medicine and help her patients achieve optimal health and wellness.   As a researcher and clinician advocate, she recognized that information inaccuracies and complexity were previously barriers to entry for many.   She saw the need for an easy-to-use, accurate, science-based genomics interpretation tool for clinicians, and she began to develop what is now IntellxxDNA™.   In addition to being a well-regarded doctor and researcher, Dr. Hausman-Cohen is a sought after speaker and educator on genomics, personalized medicine, and integrative medicine.   Dr. Hausman-Cohen received both her master's and medical degrees from Harvard Medical School.   She is board-certified in Family Medicine, a Fellow of the American Board of Integrative and Holistic Medicine, and possesses additional board certification in Integrative Medicine through the American Board of Physician Specialties.  She has been practicing full-spectrum Family Medicine and Integrative Medicine for more than 20 years. Key Takeaways: What is a gene?  What is a SNP?  What is genetics vs. genomics? Can modern diseases be the results of genetics? Are genes our destiny? Can supplements be used by bypass every potentially probelmatic SNP? What are the contributors to brain fog?  What can be done to improve mental clarity? What is the role of ApoE in Alzheimer's disease? How similar or different is autism to conditions like Lyme disease or MS or Alzheimer's? What role do genes play in our ability to detoxify environmental toxicants? What SNPs may play a role in biotoxin illness such as CIRS from Lyme disease or mold? Can the Lyme spirochete itself be an epigenetic influencer of gene expression? What role does the HLA-DR gene play in mold illness? Do genes play a role in immune modulation and autoimmunity? What is the connection between genes and MCAS? When is nitric oxide a good things vs. potentially a bad one? Are genes involved in hypermobility syndromes such as Ehlers-Danlos Syndrome? Are some more likely than others to have adverse reactions to anesthesia? Connect With My Guest: http://IntellxxDNA.com Interview Date: January 20, 2023 Transcript: To review a transcript of this show, visit https://BetterHealthGuy.com/Episode179. Additional Information: To learn more, visit https://BetterHealthGuy.com. Disclaimer:  The content of this show is for informational purposes only and is not intended to diagnose, treat, or cure any illness or medical condition. Nothing in today's discussion is meant to serve as medical advice or as information to facilitate self-treatment. As always, please discuss any potential health-related decisions with your own personal medical authority.

I Am Not My Pain with Melissa Adams
S2E8: A Nightmare Visit at the ER - Courtney's Story – Part Two

I Am Not My Pain with Melissa Adams

Play Episode Listen Later Jan 24, 2023 36:39


Continuing our discussion with warrior, Courtney, who along with uncommon conditions of POTS and Ehlers-Danlos Syndrome, struggles with worsening unexplained and life-altering symptoms. After experiencing extremely painful and concerning complaints for over a month and receiving little help from her family physician and other specialists, Courtney reluctantly attended her local emergency department only to be confronted with negligence and judgement. Tune in as Courtney talks about how her traumatic experience came to an end, and how she's coping in its aftermath.

One Thing with Dr. Adam Rinde
Neurostabilization with Amber Walker

One Thing with Dr. Adam Rinde

Play Episode Listen Later Jan 19, 2023 59:17


Episode 83: Neurostabilization with Amber Walker. Link in Profile and below, or Scan QR code on picture. The worlds of Mast Cell Activation Disorder, Postural Orthostatic Tachycardia Syndrome, and Hypermobility Ehlers Danlos Syndrome have many threads in common and many shared experiences. The common thread in these conditions expands to the fact that the symptoms, causes, and triggers are unpredictable, undefined, and this experience is largely disruptive to the nervous system. Further the nervous system disruption makes the symptoms worsen. How serious should we take neurostabilization in these conditions? To help answer this question, I welcomed on Amber Walker, PT, DPT, CFMP, CNPT. Her unique personal and clinical journey provides a most comprehensive look at this area: We cover many things such as: Where to start when complex health conditions present. How the immune system and environmental triggers effect the Vagus nerve and limbic system Polyvagal theory Nervous system balancing Mast Cells and much more This episode is dedicated to Projectmercy.org an organization committed to education, healthcare, food security, adult skills and infrastructure in Ethiopia. For each of the first 100 listens we will donate $1. You too can donate here BIO- Amber Walker, PT, DPT, CFMP, CNPT is a doctor of physical therapy with advanced training in functional medicine, nutrition and natural healing. She specializes in working with patients who suffer from mast cell activation issues, Chronic Inflammatory Response Syndrome from mold exposure, dysautonomia, hypermobility spectrum disorders, hereditary angioedema, PASC (post-acute sequelae of Covid-19) and other chronic conditions. As the owner of Origin Wellness, she encourages a “root issue” approach to patient care. Amber is the author of “Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome” (2019) and “The Trifecta Passport: Tools for Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome” (2021). Her 2022 course "Conquering CIRS" focuses on healing from mold exposure. Amber utilizes the Safe & Sound Protocol to help foster healing for autonomic nervous system regulation and is trained in CranioBiotic Technique, a natural method of addressing health stressors and improving immune function. She utilizes a hands-on approach to physical therapy through dry needling, manual therapy and chronic illness-conscious exercise strategies. Career highlights include the role as a public health volunteer in Peru, and Amber continues to be passionate about working toward creative community health solutions. She's also enjoyed the roles of swimming coach, paddleboarding company owner, faculty with two universities in Colorado and is a member of the Ehlers-Danlos Society International Consortium: Allergy & Immunology Working Group. In her spare time, you can find Amber on a surfboard, mountain trail or somewhere in Latin America. Learn more: www.originwellnesscolorado.com https://originwellness.teachable.com/p/conquering-cirs www.mastcellsunited.com --- Support this podcast: https://anchor.fm/adam-rinde/support

Long Covid Podcast
68 - Dr David Saperstein - links in Long Covid, MCAS, Dysautonomia, EDS & more

Long Covid Podcast

Play Episode Play 47 sec Highlight Listen Later Jan 18, 2023 54:39 Transcription Available


Episode 68 of the Long Covid Podcast is a chat with Dr David Saperstein from the Center of Complex Neurology, EDS & PoTS based in Phoenix, Arizona. Dr Saperstein has been working with complex conditions for over 20 years and is now also helping those with Long Covid and post-vaccine symptoms.This is a fascinating discussion about approaches to diagnoses & treatment, how certain conditions can affect one another as well as what can be done.I hope you enjoy as much as I did.Center for Complex Neurology Long Covid page Support the show~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs.Share the podcast, website & blog: www.LongCovidPodcast.comFacebook @LongCovidPodcastInstagram & Twitter @LongCovidPodFacebook Support GroupSubscribe to mailing listPlease get in touch with feedback and suggestions or just how you're doing - I'd love to hear from you! You can get in touch via the social media links or at LongCovidPodcast@gmail.com

I Am Not My Pain with Melissa Adams
S2E7: A Nightmare Visit at the ER - Courtney's Story – Part One

I Am Not My Pain with Melissa Adams

Play Episode Listen Later Jan 17, 2023 38:05


Let's catch up with warrior Courtney, from Episodes S1E11 and S1E12, who discussed the dismissiveness, gaslighting and judgements she faces on her odyssey to find respectful medical care. Courtney manages multiple rare conditions, which include POTS and Ehlers-Danlos Syndrome, but she also struggles with worsening unexplained symptoms, which are accumulating over time. Her uncommon, complex and ultimately poorly understood diagnosed conditions alone create their own significant difficulties when accessing emergency room care. In combination with her new, seemingly unconnected, symptoms Courtney faces nurses and doctors who hyper-focus on certain complaints, such as pain, while completely dismissing or shrugging off others. Ultimately sending her home with no answers, and little more than temporary pain control. Listen as Courtney recounts a recent horrific and nightmarish 21 hour-long emergency room visit, where her symptoms were not only dismissed, but where she was repeatedly denied basic compassionate care and how she's coping after her ordeal.

ADHD reWired
464 | The Power of Questions with Javier Amor

ADHD reWired

Play Episode Listen Later Jan 17, 2023 43:27


In this episode, Javier Amor joins Eric from New York City!  Javier is a real-estate broker and is also an Alumni Community member of ADHD reWired's Coaching and Accountability Groups.  Today, Javier shares his journey through chronic pain, managing Ehlers-Danlos syndrome (EDS), and self-advocacy.  You'll also hear how a curious mindset and the power of questions changed Javier's life, and also how asking better questions led to saving his father's life.  Other Questions/Topics Answered in this Episode: [00:01:55] Javier shares why he wanted to learn the skill of asking better questions  [00:05:29] “It starts with questioning myself.” [00:05:51] “How can I communicate to the doctors to make them think without being confrontational?”  [00:10:56] The power of the pause, and “Is this going to be constructive, or is it going to ‘defeat'?”  [00:11:28] Using cues and the “point of performance” to act on new knowledge  [00:17:52] Javier talks about managing chronic pain [00:19:08] Javier shares how he prepared himself to see his doctor with what he learned through ArC and the books he's read [00:22:09] Instead of asking x, ask y instead.  [00:22:50] Javier speaks about Ehlers-Danlos Syndrome  [00:25:26] An example of asking curiously vs. telling  [00:27:34] “This is my mission.”  [00:31:28] The importance of asking & advocacy  [00:33:26] “I do get stuck, but I don't stay stuck.” [00:34:36] “To change self-concept as an adult… takes time.” [00:36:43] Eric & Javier share some final thoughts & words of wisdom Resources & Honorable Mentions: Book:   Book: Instagram: Check out the Other Podcasts on the ADHD reWired Podcast Network: with Brendan Mahan with Will Curb with MJ Siemens

See Beneath Your Beautiful
096. Nirvana Marie has been struggling much of her life with chronic pain. She has Ehlers-Danlos syndrome, POTS, and a spinal cord tumor. After a divorce and a lot of mindset work, she has a positive attitude and is helping others find theirs

See Beneath Your Beautiful

Play Episode Listen Later Jan 14, 2023 38:02


Nirvana Marie has been struggling much of her life with chronic pain. She has Ehlers-Danlos syndrome, POTS, and a spinal cord tumor. After a divorce and a lot of mindset work, she has a positive attitude and is helping others find theirs.Beneath Your Beautiful is an award-winning podcast of the 2022 International Positive Change Podcast Awards, including first place in Self Help and Health & Wellness. Guests share stories of adversity and perseverance which inspire, encourage and challenge us. Host Hara Allison embraces these tough conversations, intimately exploring our loves, fears and hopes with a delicious combination of depth and lightness.byb.li/podcast_applebyb.li/podcast_spotify To get in touch with Hara Allison:Magazine + Podcast: beneathyourbeautiful.orgPhotography: hara.photographyDesign: studioh-creative.com

The 1505 Club
Episode 107: Ehlers-Danlos Syndrome

The 1505 Club

Play Episode Listen Later Jan 10, 2023 16:08


Ehlers Danlos Syndrome is a condition that is being diagnosed more frequently, and it is likely that a number of patients have an undiagnosed version of this condition. EDS creates a unique clinical picture with some unique features we should consider if we want to get the bet results. Today, we take a closer look at EDS and how we should consider it from a Chiropractic perspective.

Maximum Health:
Ehlers-Danlos Syndrome a Connective Tissue Disorder is on the Rise, Maximum Health talks with Mayo Clinic expert Dr Dacre Knight and EDS patient for over 30 years Shelly

Maximum Health: "Quality Living" Radio

Play Episode Listen Later Dec 29, 2022 26:30


  Ehlers-Danlos Syndrome a Connective Tissue Disorder is on the Rise, Maximum Health talks with experts: Mayo Clinic Medical Director of the Ehlers- Danlos Syndrome department, Dr Dacre Knight and Shelly EDS patient for over 30 years.

Health Upgrade Podcast
VNS For Ehlers - Danlos Syndrome | featuring Abigail Butterfield

Health Upgrade Podcast

Play Episode Listen Later Dec 14, 2022 64:13


In today's episode we have the pleasure of talking with Abigail Butterfield. She is an Adult and Geriatric Nurse Practitioner certified to practice by the American Academy of NurseHer practice combines traditional and alternative treatment modalities to create a sanctuary in which all people collaborate in their healing - mind, body and spirit - and are empowered to engage in their own health and wellness. She completed her graduate degree at Walden University in 2010 earning a Master of Science in Nursing. She has been practicing since 2014 as an Advanced Practice Registered Nurse and gained experience in Behavioral health and Addiction Recovery.Abigail takes pride in working closely with her patients to determine their unique needs. She is passionate about providing high quality, compassionate and comprehensive mental health services to her patients. Her mission is to work closely with patients to assist in giving them the support, tools, and proper education needed to reach their wellness goals. Rate and review before the next episode. If you want to know more about us and what we do, go to www.healthupgradepodcast.com. Contact info: Navaz Habib Email: podcast@healthupgraded.comFacebook: https://www.facebook.com/DrNavazHabib/Instagram: https://www.instagram.com/drnavazhabib/LinkedIn: https://ca.linkedin.com/in/drnavazhabib JP Errico LinkedIn: https://www.linkedin.com/in/jp-errico-097629aa  Abigail ButterfieldLinkedIn: https://www.linkedin.com/in/abigail-butterfield-3326a968/ 

This EndoLife
How Hormones Impact ADHD and the Link Between ADHD, EDS, Dysautonomia and Pain Syndromes with Adele Wimsett

This EndoLife

Play Episode Listen Later Dec 12, 2022 53:12


Did you know that ADHD has been linked to patients with joint hypermobility, pain and dysautonomia? Given that endometriosis is now being associated more and more with hypermobile Ehlers Danlos Syndrome and hypermobility spectrum disorders, as well as POTS and dysautonomia, that means that there could be a reasonable percentage of people with endo also living with ADHD. So today on the podcast, I'm joined by Adele Wimsett to discuss this topic further. Adele Wimsett is a Women's Health Practitioner specialising in cyclical awareness, education, hormone balance and ADHD. After being diagnosed with ADHD at 41, Adele went onto discover the many ways in which hormones and the stages of the menstrual cycle can affect ADHD traits. In today's episode, Adele shares with us her story, the ways in which hormones impact ADHD and how we can work with our cycles to improve our experience of ADHD. In this episode we discuss: What ADHD is Why it presents differently in females and cyclical people and what this means for diagnosis How hormones affect ADHD traits What impact hormones have on traits during different hormonal phases of a cyclical person's life How we can support our hormones to live an adhd friendly lifestyle. Show Notes Adele's website Adele's Instagram Research: https://www.frontiersin.org/articles/10.3389/fpsyt.2021.786916/full https://www.sciencedirect.com/science/article/pii/S0022395621004258 Let's get social! Come say hello on Instagram or sign up to my newsletter. My cookbook This EndoLife, It Starts with Breakfast is out now! Get 28 anti-inflammatory, hormone friendly recipes for living and thriving with endometriosis. Order your copy here. If you feel like you need more support with managing endometriosis, you can join Your EndoLife Coaching Programme. A 1-to-1 three month health and life coaching programme to help you thrive with endometriosis. To find out more about the programme and to discuss whether it could be right for you, email me at hello@thisendolife.com or visit my website. This episode is produced by Ora Podcasts. Ora provides audio editing, management and other services to make podcasting simple and sustainable for their clients. Health coaches, nutritionists, mediums, personal trainers, tarot readers, teachers, or just those striving for a better world, Ora can help you start and maintain your podcast. Get in touch today. This episode is sponsored by BeYou Cramp Relief Patches. Soothe period cramps the natural way with these 100% natural and discreet menthol and eucalyptus oil stick on patches. Click here to find out more and to shop: https://beyouonline.co.uk/pages/how-it-works

Hypermobility Happy Hour
61 - Dr. Melissa Koehl (PT) on Treating the Full Spectrum of Hypermobility

Hypermobility Happy Hour

Play Episode Listen Later Dec 11, 2022 72:29


On this episode, Kerry interviews Dr. Melissa Koehl, a physical therapist diagnosed with hypermobile Ehlers-Danlos Syndrome. Dr. Melissa was a competitive level 10 gymnast in her earlier years and ended up incurring a number of injuries including a career-ending stress fracture to her lower back. Dr. Melissa created her own ChimeraFit method that combines elements of Pilates, Yoga, strength, and balance work. She has been teaching her method to others with hypermobility, arthritis, and joint pain for over 20 years. She also has a great instagram page with lots of content about different movement approaches for people at many places on the hypermobility spectrum. Links: https://www.instagram.com/dr.melissakoehl.pt/ https://www.chimera-health.com/ https://www.chimera-health.com/hypermobile-fitness-course

Read It With Whiskey
Kristy Nicolle, Something Blue

Read It With Whiskey

Play Episode Listen Later Dec 6, 2022 30:14


Thank you so much for tuning in with Read It With Whiskey! In this episode, Laura interviews Kristy Nicolle, author of Something Blue, a dystopian romance novel. In this interview, Kristy and Laura touch on Kristy's Ehlers Danlos Syndrome and how it affects her writing career. They chat about characters and conspiracy theories. And they discuss how dystopian stories have a common thread of rebellion which often comes at a cost to the characters. Finally, Kristy talks about the Kristy Nicolle Fantasy Infiniverse! Here is how to contact ­­­Kristy and follow along with her writing career: Instagram: https://www.instagram.com/authorkristynicolle/ Website: https://kristynicolle.com/ Books: Something Blue https://amzn.to/3iCmPeZ Starsong: A Zodiac Inspired Poetry Collection https://amzn.to/3h0lpKU I Am Arcana: A Tarot Inspired Poetry Collection https://amzn.to/3upgI0q The Tidal Kiss Trilogy (a The Queens Of Fantasy Saga trilogy) https://amzn.to/3VR5bCU The Ashen Touch Trilogy (a The Queens Of Fantasy Saga trilogy) https://amzn.to/3ukiNe9 The Aetherial Embrace Trilogy (a The Queens Of Fantasy Saga trilogy) https://amzn.to/3VIsuig Host, Laura Juntunen's, Resources & Works: Find her books: https://www.laurajaylive.com/shop Website: https://www.laurajaylive.com Subscribe to the Newsletter: https://www.subscribepage.com/g5f1b9 Instagram: @LauraJayLive & @ReadItWithWhiskey --- Support this podcast: https://anchor.fm/readitwithwhiskey/support

The Caregiving Soul
Caregiving: Preparing for the Unknown with a Loved One

The Caregiving Soul

Play Episode Listen Later Dec 5, 2022 28:46


Dannelle speaks with Dr. Zev Minkoff, husband of Empowered Us' Director, Eva Minkoff. In this episode, Zev shares insight into some possible ways to prepare for caregiving and how to best communicate with our loved ones. You'll learn some of the tools he uses to stay present and centered when the uncertainty of caregiving feels overwhelming. “We had a very intense, emotional conversation about what it looks like to be the spouse of somebody with Ehlers Danlos Syndrome (EDS)...Everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work when you have a partner who gets injured easily?... I think that helped decrease my fear of the unknown”. - Dr. Zev Minkoff Timestamps02:23 Zev's three core values and how they connect to his caregiving experience 04:03 More about Eva's diagnoses 06:19 How to advocate for loved ones to get a proper diagnosis 11:03 How to prepare to be a caregiver 16:39 Zev's thoughts on Eva's future and prognosis 21:06 How to help caregivers as a physician 23:04 How the healthcare system can support family caregivers 25:34 Zev's passions outside of caregiving Takeaway Learnings1. Preparing for a care partnership is not something we're taught how to do. Committing to an ongoing conversation about what works and doesn't work for both care partners' needs create opportunities to find solutions as care needs change. 2. Being in a care partnership takes courage. It's important to find ways to be both compassionate and set personal boundaries when flare ups or moments of distress occur. 3. Strong care partnerships, whether professional or informal, are centered around communication. An essential part of effective communication for professional caregivers in particular is asking: “What questions do you have?”. When we're dealing with the unknown, we can support caregivers by creating an environment that normalizes questions and demonstrates empathy. Actionable Tips 1. No one wants to react to an emotionally charged situation in a way we later regret. Dr. Zev described using the count down from 10 technique to take a moment before reacting. Taking a pause gives us time to respond with our best selves. 2. The stressors of caregiving mean that we need to stay tuned in to our mental health. In addition to professional therapy, it's important to know we have no or low-cost options as well. Using a meditation app as part of our self-care routine, making sure we've got the number for a crisis or support organization, like those available through the National Alliance on Mental Illness (NAMI) or the Caregiver Action Network, and checking in with a caregiving support group are a few ways we can prepare to take care of our mental and emotional health. 3. When in situations with so many variables outside of our control, prepare as best you can for the unexpected to stay more flexible, like packing an extra bag with supplies you can't otherwise easily access, planning extra time for travel, using a mobility device or private transportation if feasible, and of course, don't forget the extra snacks and water. About Dr. Zev MinkoffDr. Zev Minkoff is an outgoing, double board-certified Pediatric Gastroenterologist and the husband of Empowered Us' Eva Minkoff. Eva has been diagnosed with Fibromyalgia and Ehlers Danlos Syndrome. Zev's background in medicine gives him an understanding of the medical system and a different perspective in anticipating being a future primary caregiver for his wife. Hosted on Acast. See acast.com/privacy for more information.

Working Scientist
Moving labs: a checklist for researchers with disabilities

Working Scientist

Play Episode Listen Later Dec 2, 2022 28:35


Kelsey Byers outlines some of the things disabled scientists should look out when they are looking to move labs, both at home and abroad. Byers, an evolutionary chemical ecologist who was diagnosed with Ehlers-Danlos Syndrome in her 20s and is now a group leader at the John Innes Institute, a plant and microbial research institute in Norwich, UK, also offers advice on how to talk about disability to potential employers.She is joined by Logan Gin, a STEM education researcher at Brown University in Providence. Gin, who has diastrophic dysplasia dwarfism, describes how his research is helping to identify solutions to support students with disabilities.Every institution should be able to support faculty members and scholars with disabilities, adds Siobhán Mattison, an evolutionary anthropologist at the University of New Mexico in Albuquerque, who has myasthenia gravis.Kim Gerecke, a behavioural neuroscientist at Randolph Macon College in Ashland, Virginia, talks about the measures she has been able to take to support disabled colleagues at her institution. Hosted on Acast. See acast.com/privacy for more information.

Life Hacks - Careers Toolkit
Adapt The World With Anoushé Husain

Life Hacks - Careers Toolkit

Play Episode Listen Later Nov 26, 2022 15:45


Life Hacks' Katie Thistleton and influencer and disability rights activist India Sasha ask if the world was re-built tomorrow “what would you change to make life fairer and easier for disabled people?” In this episode they are joined by Anoushé Husain, a paraclimber with Ehlers-Danlos Syndrome. They discuss everything from climbing as a physically disabled person to allowing disabled people to try things and fail, rather than not letting them at all.

Sci Guys
188: The Science of Ehlers-Danlos Syndrome

Sci Guys

Play Episode Listen Later Nov 21, 2022 47:18


You might have heard of EDS, but it's a bit more than stretchy skin and doubled-joints, this week we dive into a range of Ehlers-Danlos Syndromes in this episode voted on by our patrons! Grab our merch now: http://normalcitizen.store You can WATCH the podcast over on our YouTube channel: http://youtube.com/SciGuys Help keep the show running by supporting us on Patreon! http://patreon.com/sciguys If you'd like to see more of us, follow our socials! Website sciguys.co.uk TikTok https://www.tiktok.com/@sciguys Twitter http://twitter.com/SciGuysPod Instagram http://instagram.com/SciGuysPod Facebook http://facebook.com/SciGuysPod Follow the SCI GUYS @notcorry / @lukecutforth References & Further Reading https://www.nhs.uk/conditions/ehlers-danlos-syndromes/ https://www.ehlers-danlos.org/what-is-eds/information-on-eds/diagnosis/ https://www.ehlers-danlos.com/what-is-eds/ https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes https://www.ncbi.nlm.nih.gov/books/NBK549814/ https://www.ncbi.nlm.nih.gov/books/NBK507709/#:~:text=Collagen%20is%20protein%20molecules%20made,tendons%2C%20bones%2C%20and%20ligaments. https://www.britannica.com/science/protein/Special-structure-and-function-of-proteins#ref593800 https://thetab.com/uk/london/2016/02/23/meet-the-inspiring-fresher-whose-bones-dislocate-daily-23692 By self - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=1385193

DEPTH Work: A Holistic Mental Health Podcast
18. Chronic Health Conditions and Navigating The U.S. Medical Industrial Complex with Lilly King

DEPTH Work: A Holistic Mental Health Podcast

Play Episode Listen Later Nov 18, 2022 47:51


In this beautiful intimate conversation with Lilly King, we discuss the realities of navigating mental and physical health concerns within a fractured health care system in the U.S. We share our best tips for advocating for yourself, navigating the medical industrial complex, talking to doctors, and building a care team. Lilly's work is largely interdisciplinary. She loves chatting with people about nutrition, health advocacy and how to navigate US healthcare. Her diagnosis of Ehlers Danlos Syndrome has further ignited her desire to help people work around the many roadblocks in privatized healthcare. Find her on instagram @fundriedtomato Also in this episode: Living with Ehlers-danlos syndrome, celiac disease, ibs, and chronic pain Childhood illnesses and autoimmunity Taking a functional medicine or holistic approach Chronic inflammation and its role in mental health issues Community support and prevention for chronic illness Help Lilly get her service dog: Venmo: @Lillking LINKS: Healing as Homecoming Dec 4th 2022 - https://idha.app.neoncrm.com/np/clients/idha/event.jsp?event=44 RESOURCES: https://communityhealthadvocates.org/ (for NY only) https://directlabs.com/ https://chriskresser.com/ Edward Bullmore "The Inflamed Mind" https://www.goodreads.com/book/show/39899586-the-inflamed-mind

Clare FM - Podcasts
Anne Micks Voted Clare Family Carer of the Year

Clare FM - Podcasts

Play Episode Listen Later Nov 15, 2022 14:10


On Tuesday's Morning Focus, Alan was joined by Anne Micks who has recently been voted the 2022 Netwatch Clare Family Carer of the Year Award. Anne discussed the role she plays in caring for her daughter who lives with Ehlers Danlos Syndrome, a condition which affects the connective tissues of the body causing chronic pain and fatigue. She gave up her high profile job in order to take full time care of her daughter Ciara, who views her mother as a hero like figure.

Hypermobility Happy Hour
57 - Victoria Daylor: From Dancer to Pre-Med with hEDS

Hypermobility Happy Hour

Play Episode Listen Later Nov 11, 2022 54:44


Victoria was a professional dancer and Gyrotonic Instructor who has performed throughout the US and worldwide including in Israel, Greece, and a tour in Austria. After being diagnosed with hypermobile Ehlers-Danlos Syndrome, Victoria switched gears and is now a Postbac student at Columbia University in New York City where she is pre-med and preparing for a career as a physician. Links: https://www.victoriadaylor.com/ https://www.instagram.com/victoria.daylor/

Misfits
Ep. 22 | Supporting Someone with Chronic Pain, Teaching Yoga for Every Body, and Learning to Let Go Through Reiki with Kristin Frank

Misfits

Play Episode Listen Later Nov 8, 2022 29:07


Kristin Frank (she/her) is an emotional health facilitator, trauma-informed adaptive yoga teacher, mindfulness educator, and reiki practitioner based in the Fargo-Moorhead area. She is listed as an Advanced Integrative Processing Technique Facilitator with the Institute of Healing Arts. Along with her many roles, Kristin is also a person living with Ehlers-Danlos Syndrome, which is a group of hereditary connective tissue disorders characterized by elastic skin, hypermobile joints, and weakened muscle and tissue. Today we talk about Kristin's views on how to best support someone with chronic pain, teaching adaptive yoga for every body, and learning to let go of negativity through reiki. Info about and sources for Ehlers-Danlos syndrome (EDS): https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125#:~:text=Ehlers%2DDanlos%20syndrome%20is%20a,underlying%20structures%20in%20your%20body. https://medlineplus.gov/genetics/condition/ehlers-danlos-syndrome/ https://www.ehlers-danlos.com/what-is-eds/ Integrative Processing Technique trainers and facilitators with The Institute of Healing Arts: https://www.ihaofutah.com/meet-our-trainers-and-facilitators Beyond Boundaries: https://beyondboundaries.us/ Ecce Yoga: https://www.ecceyoga.com/about Kristin's website: https://www.lomalifewholebodywellness.com/ You can also find her on Instagram @loma_life. A couple of corrections: -I introduce Kristin as Moorhead-based and at one-point in the show, she says she lives in Fargo. Fargo, ND and Moorhead, MN are cities that are right next to each other. Kristin is Fargo-Moorhead based. -In our conversation, I say that it is strange that I have similar leg pain to my mom even thought I'm adopted and "there's nothing biologically or genetically similar between us." That's not scientifically true as all humans are genetically similar. I meant that she couldn't have passed down that trait to me. --- Support this podcast: https://anchor.fm/annie-prafcke/support

Major Pain
Living with Multi-Generational Ehlers-Danlos Syndrome

Major Pain

Play Episode Listen Later Nov 2, 2022 57:24


Kenneth's family has a multi-generational history with Ehlers-Danlos syndrome (EDS). Family members with the disease include his mother, uncle, grandmother and great grandmother. Kenneth was diagnosed at just 2 years old while being examined for a knee injury. A trauma caused massive swelling in his knee, producing a hematoma the […]

The Well Seasoned Librarian : A conversation about Food, Food Writing and more.
Pagan Author Panel: (Laurel Woodward, J.D. Walker, Lisanna Wallance, Julia Halina Hadas ) Well Seasoned Librarian Season 8 Episode 13

The Well Seasoned Librarian : A conversation about Food, Food Writing and more.

Play Episode Listen Later Oct 31, 2022 64:02


Today we have an assortment of past authors on the program to talk about their work and current projects and to chat about Halloween traditions. We have * Laurel Woodward is a writer, gardener, kitchen witch, and tarot reader living a magickal life in the Pacific Northwest. She is the author of Kitchen Witchery: unlocking the magick in everyday ingredients and Backyard Garden Witchery: creating magickal space outside your door. Visit her blog at Liminallandscapes.com * JD Walker is an avid student of herbalism and gardening. She has written a regular garden column for over 30 years. She is an award-winning author, journalist and magazine editor and a frequent contributor to the Llewellyn annuals. Her first book, A Witch's Guide to Wildcrafting: Uncommon magick with common plants, published by Llewellyn Worldwide LTD, was released in Spring 2021. Her new book, Under the Sacred Canopy, a Search for the Universe Tree, is due out in early 2023. * Lisanna Wallance grew up in New York, attending Barnard College of Columbia University before moving to Paris. She was born with Ehlers Danlos Syndrome, a connective tissue disorder that causes dysfunction throughout the body. When her symptoms suddenly worsened, she delved deeper into her passion for cooking as a way to help heal herself. She spent years experimenting with her diet, using food, plant and mushroom medicine as a way to regain control over her life. Her first cookbook, The Natural Witch's Cookbook is the culmination of the medicinal knowledge she acquired during her health journey and a sublimation of her suffering to help others. Lisanna lives in Paris with her long-time boyfriend and splits the rest of her time between Normandy, New York, and Martha's Vineyard. *Julia Halina Hadas is a practicing witch, avid craft cocktail fanatic and bartender, and magical mixologist. Having worked at a distillery and as a craft cocktail bartender in the San Francisco Bay Area, she combined her love of the craft cocktail movement with her witchcraft practice. She holds a BA in anthropology, and is a certified crystal healer, shamanic, and reiki practitioner. In her free time, she sings rock music, enjoys wire-wrapping pendants, and creating magical mixtures for her blog. You can learn more at her blog, WitchcraftCocktails.com or her website, Juliahalinahadas.com This episode is sponsored by Culinary Historians of Northern California, a Bay Area educational group dedicated to the study of food, drink, and culture in human history. To learn more about this organization and their work, please visit their website at www.chnorcal.org If you follow my podcast and enjoy it, I'm on @buymeacoffee. If you like my work, you can buy me a coffee and share your thoughts

That's So Chronic
Chelsea Haughton & Polycystic Ovarian Syndrome, Premenstrual Dysphoric Disorder & Hypermobile Ehlers Danlos Syndrome

That's So Chronic

Play Episode Listen Later Oct 31, 2022 38:06


Today's episode of That's So Chronic is with Chelsea Haughton and we are talking about her diagnosis of polycystic ovarian syndrome (PCOS), premenstrual dysphoric disorder (PMDD), and hypermobile ehlers danlos syndrome (hEDS). In this episode, Chelsea shares her experiences of seeking a diagnosis which includes flying to a different city for an appointment, how each of these conditions affect her, the importance of talking about periods, and how validating it can be talking to someone who understands. Connect with Chelsea and see her embroidery creations on IG: @sewnearyetsewfar And as always, feel free to reach out and connect over on IG or Tiktok, I'm @thatssochronic Thank you for listening and supporting! You're the best! @thatssochronic | @jessssbrien | #thatssochronic Free monthly newsletter: thatssochronic.substack.com Application form to share your story: https://forms.gle/csebLkwfwAjiLApK9 Disclaimer: Here at That's So Chronic we are sharing personal stories and are not advocating any type of treatment, therapy, procedure or intervention. Everyone is unique so please seek professional medical advice before making any decisions for yourself or for others. Hosted on Acast. See acast.com/privacy for more information.

MeatRx
Once Bedbound, Now Thriving | Dr. Shawn Baker & Ribeye Rach

MeatRx

Play Episode Listen Later Oct 19, 2022 37:22 Very Popular


Visit https://www.dartagnan.com/ Rachel overcame Ehlers-Danlos Syndrome, dysautonomia (POTS), chronic fatigue, gastroparesis, and intracranial hypertension on the carnivore diet. Timestamps: 00:00 Introduction 04:05 Severe migraines and headaches, severe neck pain, pressure behind eyes, weakness in legs, non-epileptic seizure episodes, tingling and numbness in lower extremities, loud ringing in ears 05:00 Sensitivity to light and sound, using a wheelchair 05:29 Medications and side effects; steroids 06:12 Straw that broke the camel's back 09:51 Eating ribeye steak 12:25 Eating meat growing up 13:31 Being vegetarian as a kid 14:31 Family and carnivore diet 15:56 Recovery on the carnivore diet 17:22 Seed oils 18:20 Gastroparesis 20:09 Feeling intracranial pressure going up 21:32 What do doctors say about carnivore diet? 22:40 Brain retraining 24:22 Reintroducing foods on the carnivore diet 26:17 Plans for the future 27:53 Getting supportive messages on social media 28:34 Ehlers-Danlos Syndrome 31:36 Neck-specific strengthening exercise 32:57 Favorite carnivore foods 33:43 Husband's diet 34:43 Sugar vs seed oils 36:22 Where to find Rachel See open positions at Revero: https://jobs.lever.co/Revero/ Join Carnivore Diet for a free 30 day trial: https://carnivore.diet/join/ Book a Carnivore Coach: https://carnivore.diet/book-a-coach/ Carnivore Shirts: https://merch.carnivore.diet Subscribe to our Newsletter: https://carnivore.diet/subscribe/ . ‪#revero #shawnbaker #Carnivorediet #MeatHeals #HealthCreation   #humanfood #AnimalBased #ZeroCarb #DietCoach  #FatAdapted #Carnivore #sugarfree  ‪

The Faster Than Normal Podcast: ADD | ADHD | Health
Please Mind Your Meds w/ Scientist Miss America Camille Schrier, H.R.S.

The Faster Than Normal Podcast: ADD | ADHD | Health

Play Episode Listen Later Oct 19, 2022 20:09


Hey guys! Peter Shankman the host of Faster Than Normal here. I wanna invite you to something! I am hosting a Mastermind with 12 amazing speakers who are gonna be talking about everything from ADHD to mental health, from entrepreneurship, to just living your life better. It's gonna be on November 10th, It's gonna be virtual from anywhere in the world. Incredible, incredible speakers. The leading fitness trainer in Canada for all things. Me! A whole bunch of speakers- Scott Carney, who wrote the book which is to all about how he goes and takes ice showers every day. It's gonna be 12 amazing speakers, the CBS Early Shows' Jennifer Hartstein, really, really great people. And I'd like you to join us. Check out the link below in the show notes at ShankMinds 2022 and we will see you there. And a matter of fact, look for the discount code in the show notes as well, that'll take a hundred bucks off the cost. We'll see you soon! https://shankman.lpages.co/shankminds-virtual-2022/ DISCOUNT CODE: SMFriends22 Currently pursuing a Doctor of Pharmacy degree at Virginia Commonwealth University in Richmond, Camille completed dual Bachelor of Science degrees in Biochemistry and Systems Biology with honors at Virginia Tech in 2018. Breaking from tradition, Camille blew up the onstage talent competition with a highly engaging and entertaining version of the “catalytic decomposition of hydrogen peroxide,” winning Miss Virginia in June of 2019 and then Miss America in December 2019 live on NBC. While competing for the job, Camille Schrier wanted it known that “Miss America can be a scientist and a scientist can be Miss America.” Through her time as Miss America and beyond, Camille has focused on advocating for her social initiative “Mind Your Meds: Drug Safety and Abuse Prevention from Pediatrics to Geriatrics” with a major focus on the opioid epidemic, as well as for exciting youth in the areas of STEM. In 2021 Camille launched her own science educational brand, “Her Royal Scientist,” which furthers her goal to inspire and educate youth and normalize females in science roles. She also works to raise awareness around Ehlers Danlos Syndrome, a genetic condition that impacts her life each day. Today's episode is important to literally anyone who has ever been given a prescription. Enjoy! In this episode Peter and Camille discuss:   01:26 - Thank you so much for listening and for subscribing! 02:14 - Intro and welcome Camille Schrier! 03:30 - Ref: Margaret Hamilton's Apollo code 03:54 - Women in STEM [Science Technology Engineering Math/Medicine] 04:56 - On Imposter Syndrome and growing up in public education without many neurodiverse role models 05:47 - On a non “A+B+C= ‘this or that'” approach to goal-setting and systemic education 06:40 - There is no one ‘right way' for everyone to do something. We are unique. 07:00 - How did you wind-up winning Miss America, was it a goal? A note on risk taking 09:17 - How did your initiative “Mind Your Meds” come about and get started? 11:00 - Eyes open about medication use in the collegiate community Ref:  Safe-RX 13:53 - So much about prescription drugs has become perception, not actual awareness of what they may, and may not do!  15:40 - Adderall and co-morbidities 16:00 - Talk to your peers and kids, not everyone reacts the same! 18:00 - In the neurodiverse community we are even more at risk of addiction, if not misuse. 19:04 - How can people find more about you? Web: www.CamilleSchrier.com Socials:  @CamilleSchrier everywhere.  Twitter  INSTA  FB  YouTube  LinkedIN 19:20 - Guys, as always thanks so much for subscribing! Do you have a cool friend with a great story? We'd love to hear. I'm www.petershankman.com and you can reach out anytime via email at peter@shankman.com or @petershankman on all of the socials. You can also find us at @FasterNormal on all of the socials. It really helps when you drop us a review on iTunes and of course, subscribe to the podcast if you haven't already! As you know, the more reviews we get, the more people we can reach. Help us to show the world that ADHD is a gift, not a curse!  19:40 - Faster Than Normal Podcast info & credits — TRANSCRIPT via Descript and then corrected.. somewhat:  Hey guys. Peter Shankman the host of Faster Than Normal here. I wanna invite you to something! I am hosting a Mastermind with 12 amazing speakers who are gonna be talking about everything from ADHD to mental health, from entrepreneurship, to just living your life better. It's gonna be on November 10th, It's gonna be virtual from anywhere in the world. Incredible, incredible speakers. The leading fitness trainer in Canada for all things. Me! A whole bunch of speakers- Scott Carney, who wrote the book which is to all about how he goes and takes ice showers every day. It's gonna be 12 amazing speakers, the CBS Early Shows' Jennifer Hartstein, really, really great people. And I'd like you to join us. Check out the link below in the show notes at ShankMinds 2022 and we will see you there. And a matter of fact, look for the discount code in the show notes as well, that'll take a hundred bucks off the cost. We'll see you soon! https://shankman.lpages.co/shankminds-virtual-2022/ — [00:01:26] Peter: Hey guys. Peter Shankman here. Welcome to another episode of Faster Than Normal, it is a thrill to have you as always. It is another Monday when I do all my FTN interviews for the month. We are talking to Camille Schrier today, and I will tell you a little bit about her in a second. Uh, as you heard from the ad, there is a conference coming up on November 11th. I would love to see you there. Um, there should be a discount code in the uh, show notes, use it. You'll get a hundred bucks off and hear from 12 amazing speakers and me, so if you haven't had enough, there's even me. So that'll be fun. November 11th, virtually wherever you are in the world. All right, cool.  It is Monday. It is gray and yucky outside, but that's cool cause we're talking to a ray of, of sunshine and light today. Camille Schrier is currently pursuing a doctor of pharmacy degree at Virginia Commonwealth University in Richmond. She completed a dual Bachelor of Science degrees in Biochemistry and Systems biology with Honors of Virginia Tech in 2018. Oh, and she was Miss America in December, 2019. Uh, so yeah, there's that. She won Miss Virginia and June, 2019. Miss America, in December of 2019. You've probably seen her on YouTube where her, on stage talent competition was an entertaining version of the catalytic decomposition of hydrogen peroxide. Very, very cool stuff. I actually had seen that on YouTube before she came to my attention. Uh, it is wonderful to have you here, Camille. Thanks for so much for taking the time today.  [00:02:52] Camille: Oh my gosh. Thank you so much for having me and making me sound way cooler than I really am in real life.  [00:02:58] Peter: So, you know, you sort of broke the mold in that regard. You, you, you came up and, and you said, Okay, I'm gonna show the world that girls can be scientists, right? That, that women can do these things and it doesn't, You can mix and match. It doesn't have to be one or the other. I always look back at. Amazing photo from NASA where I was, when I was serving on the NASA Civilian Advisory Council. They sent me this, they showed me this photo. They have framed, it's the woman who wrote the majority of the code for, uh, the Apollo 11 landing. And, um, she's standing on a, uh, next to a stack of code that's literally like taller than her, right? And, and it was just, You know, you never Yeah. A woman did that. And, and I love as a, as a father of a nine year old daughter, I love that, you know, I'm talking to you and I'm gonna have my daughter, Jessa listen to this podcast because you're showing girls, um, my daughter's age and beyond that there is so much they can do. There's nothing they can't do, and, and you're doing it a lot better than me, as her dad ever could. .  [00:03:54] Camille: Well, thank you. And I think even more than that, I mean, we know that women can be scientists. There's probably more women than ever Yeah. In STEM careers. But I think one of the things that I have realized as I've progressed through my own career is that it's not always normal to see a very feminine woman, exactly. In the sciences, and maybe women feel like they have to conform to kind of be like their male counterparts or maybe are afraid to express their femininity in a lot of those fields. And so bringing the science into something that is traditionally a feminine role like Miss America was a really interesting way to break that mold open even more, and show people that you can do whatever you want. And I think that's something that even defies gender is just embracing who you are and doing it on purpose and being fearless in every single thing that you do. And so hopefully it inspired, um, young girls, young men and beyond.  [00:04:54] Peter: Well, it's interesting you bring that up because one of the things about ADHD is imposter syndrome and, and this concept that, You know, you are consistently broken and no matter what you've done, it's all been luck and you don't really have the skill to do anything. And I grew up with that, um, uh, through no fault of anyone but my own. I mean, you know, my parents were, were constantly supportive. But, you know, I grew up in an environment, in a school system, uh, public school system, which was, you know, you're different. And so you're being, you're being, uh, uh, uh, you're disobeying and, and you're, you're breaking the rules and you gotta be like everyone else. And it took me probably till. You know, late thirties, uh, to, to sort of get over that. And I think that, that, um, the more role models we have who can show that there is no one way to do anything right, I think is, is better for the world as a whole. And I see that, I see that, uh, you know, with, with what you've done. I see that more and more today, which gives me a little bit of hope.  [00:05:47] Camille: I think we do need that because we're, we're taught to follow directions. Yeah. Right. And that's what we're seeing at, That's how we are shown success is, is you do these certain things and you get success. If you go through a certain amount of education, if you do these leadership activities and get extracurriculars and get a certain gpa, then you get X, Y, or z. And I think that often as young people working on this formula, that's not necessarily allowing us to embrace what makes us unique. Sometimes we can do that in that situation, but it's often really hard. And I've struggled because I want to do things the right way, but there is no right way to do things. I've always been really focused on doing things, um, at the most, at the highest level of achievement and success and getting to a certain level. Um, but I've forgotten a lot about what I want in that, and I think imposter syndrome is so real in what I have experienced. My becoming Miss America wasn't a longtime goal. I literally signed up for a competition that was two weeks away that went to Miss Virginia. And I was like, This will be fun. Let's do it. . And I won. And then eight weeks later I won Miss Virginia and six months later I won Miss America. And I was like, how did I end up here? Right? And did I deserve this? How? How did I. How did I successfully make my way through this in doing something that was totally different than anyone else had done before, but actually winning Miss America by doing something vastly different than anyone else had done was the best reward in taking a risk and doing something different than I had ever had in my life. Yeah, because I was always afraid to take a risk because what if it goes wrong? Right. But ultimately, if it went wrong, I would just come home as not Miss America. Exactly. So, The odds were pretty good to have a good experience, and it rewarded my creativity and my ability to try something new that then set me on a path to wanna do that more in my professional life. [00:07:48] Peter: Well, that's one of the things that I try to explain to, uh, people, you know, especially the kids. And, and you know, when they, when they read my book and then, and they, they reach out is, you know, the concept that, that, that being the, the, the worst, the biggest risk it said is not taking one. Right. And, and the concept. you can do something and fail or you cannot do it, and you'll be in the same place if you failed. Yeah. So the only option you have that breaks you out of that is to try it, you know? And I, I love, I love that. Cause I think that that, you know, again, I didn't have that mentality. It was funny. I didn't have the mentality as a kid yet. I was always different. So it was like I was, I was fighting, I was swimming upstream, I was fighting against that. And once I embraced it, You know, the whole world opened up and so I sort of think you're doing that as well. Um, so Miss America can be a scientist and a scientist can be Miss America. I love that. Tell me about, um, mind your meds. So, you know, when I was growing up and we talked about the offline, when I was growing up, the, uh, the concept of medication for ADHD or anything like that, really. Kids didn't really take meds. Um, they took medication if they were sick, I get, get penicillin, right? Whatever, you know, or Sudafed and I, but it wasn't, I, I grew up, I guess in an earlier time in the eighties we didn't have that. We had cigarettes and um, you know, I once I, and they were healthy back then, so it's fine. But, um, you know, I look at, I look at. Today I have, I have, I have friends who have kids in college and, and they're like, Yeah, the, the kids, the kids pass around, uh, Adderall, like it's candy. And, you know, that's not necessarily a good thing. Um, so talk about Mind Your Meds. Where did it come from, the concept? Uh, how, how'd you get to where it is?  [00:09:16] Camille: Sure there's such a huge problem related to pharmaceuticals and medications in the country. And as a doctor of pharmacy student, I wanted to choose a cause that I would represent as Miss Virginia and Miss America that was something I was passionate about, but also something that I felt like would affect every person that I came across, that would be relevant to every individual in some way. And I feel. All of us have either taken a medication or have known someone who's taken a medication in their lives. We all have kind of lived that or taken even just a over the counter medication at some point. And when I went through my pharmacy education, I started to realize how easy it is to make mistakes, to take things improperly, the dangers of medications that are even over the counter. Let alone things that are prescription or controlled substances, the risks that can come along with those things, and how we can really do things that are very easy to prevent, um, harm and misuse and things that damage our communities essentially. So I wanted to focus on medication safety as one big piece of what I do. But then on the other side, there's also an issue with substance use disorders in this country. With stimulants, with opioids and many other substances, um, both prescription and illicit. And I saw more and more of that as time went on. Now I spend a lot of time talking about the opioid epidemic, which is one that has just drastically increased over the past 20 years for a lot of different reasons, but is really running rampant, uh, in our communities and is, is killing people at a level that I've, I never would've anticipated, but is really sad. So, Looking back at kind of all of the things that I have gotten to do. You mentioned stimulants and when I was growing up, I can't really even remember a lot of my peers taking stimulants for, for diagnoses like adhd. Now I went to school, like elementary school, middle school, in the early two thousands. So a little bit after, but still not that long ago I do feel like as time has gone on, it's become more popular. Right? Um, and. I will say when I got into college was the first time where I really saw medications being misused in my, with my own eyes. And it was always stimulant medications. And I think as someone who's looking at ways, uh, That people can be proactive with medication safety. I feel like if you have a prescription medication, especially controlled substance like a stimulant, you have to be a responsible steward of that sub of that substance. It is your responsibility to take control of that and prevent others from potentially being harmed by that. And so I've actually teamed up with a company called Safe- RX who produces locking pill viles. Mm. And that's just like an easy tool that I can recommend to families to kind of secure these medications, either at home or or students taking them to college. I talk a lot about children accidentally taking medications because they don't know what they are. They think that they're candy, making sure that you are locking up medications, keeping them up and away from children, being a safe steward of medications. These are all things that can not only keep people safe, but prevent misuse, prevent substance use disorders from coming up in our communities. It's all a cycle, and I think that it needs to be talked about more. It's not really an educational topic that I heard a lot about when I was in school and that I still don't really hear a lot about. And so I think, you know, as a pharmacy student, pharmacists have such a unique perspective and role in being a medication safety expert, and that's why I'm excited to be a pharmacist as well. [00:13:06] Peter: That's a wonderful answer. I remember in the eighties, uh, you'd come home from school at like 3:00 PM and you'd watch like cartoons or whatever, and there was always a really, really bad. Like cringy commercial called pills aren't candy. And I don't know if you, I don't know if you had that in the 2000's by the way. I, I, I died a little bit when you said, you know, I, Yeah, I went to school in the two early two thousands. I just, I'm sorry. Died a little bit . Um, I had, I had someone I was watching, uh, TikTocs with my daughter and, uh, There was one where a woman goes, uh, you know, the, the older generation on TikTok, you know, the ones like born in the late nineties. I'm like, You, we, you're,  [00:13:39] Camille: I've seen that it even made me cringe  [00:13:41] Peter: everyone's app, right? Yeah. I'm deleting off everyone's phone right now, . But um, but yeah, no, I remember the we are not candy thing and, and it's, and it's true. I mean, as a, you know, I had the conversation with my daughter years ago, you know, this is anything in a bottle that looks like this or whatever. You don't, you don't take anything you don't know. You don't take anything. I haven't. Yeah. And, and, um, the interesting, interesting thing about the lock. You know, I wonder if it's, if it's also a peer pressure thing in the respect that, oh, you know, dude, can I, can I score that off you, can I tell, you know, score real, And it's a, kids that I've talked to don't necessarily look at it as medication. They look at it as a, as finals help. You know, there's a difference in, in, in how you look at it.  [00:14:20] Camille: I think that you're absolutely right and that's how I saw it used in students that were trying to stay up all night Yes. And study, and that it was really a commodity instead of a prescription medication that genuinely helps people Yeah. That have disorders like ADHD and is extremely effective in that. Um, I do feel like what you're saying is very true and, and potentially even putting something in a container like a locking pill vile could mentally even make that seem like less of a commodity and something that should be protected. Um, and obviously I don't think there's studies along what that impact might be for students, but I think just looking anecdotally, that would be something that I'm sure that my peers probably would think differently about when I was in college. Uh, instead of just this, Oh, can I get one of these off of you? Which really surprised me, even though I'm a little bit straight edge to begin with. But seeing students talking about in group messages of like, Oh, does anyone have an Adderall? I have an exam tomorrow. Um, Really bothered me to my core because I just felt like it was so wrong. Um, and so risky from a medical perspective as well, because patients and students that have comorbidities who maybe they don't even know that they have yeah, an issue, maybe they have an undiagnosed cardiovascular problem that they don't know about, and taking a medication could, could really be detrimental for them. There's so many things that go into making sure that a medication is right for a patient. But if that, that's why these medications are prescription, because there's a prescriber that's evaluating all these different things. And I really wanna stress if there's parents listening, to have those candid conversations with your students about what the, what the ultimate risks of this medication could be for them and for other people around them and the importance of keeping that to yourself. And the also the importance of not taking anyone else's medications. Especially I have to, to emphasize in the time of fentanyl. Yeah. When we are not sure what is in any pill that we take, we aren't sure that a pill that someone gives us is actually from whatever they say that it's from. It could be a pill that was produced, uh, not in a pharmaceutical manufacturing facility that could be cut with fentanyl and could lead to an overdose. There are so many risks taking any type of medication or any substance from anyone I believe. Playing Russian roulette right now. And so that's a continued conversation outside of just protecting your own prescription, but emphasizing to everyone, students, children, adults, and beyond that we have a huge problem in this country with opioids and with fentanyl that is now coming into other pieces of, of the, um, kind of drug scene maybe in the stimulant sector with, um, methamphetamines and beyond, which is a deadly, a deadly consequence that could happen. And I, I hate to be dramatic and I know that sometimes I sound like a broken record in that, but it's a one decision that you could potentially make that you cannot correct. Right. And that is something that I really emphasize to everyone that I meet because it's, it really. It goes beyond just, Oh, I made a mistake and I'm gonna apologize. And it's unfortunate. So, uh, I do think that it's so important for us to not only be safe stewards, but have those conversations, have candid conversations with people, um, because these medications are also really difficult to get, specifically when we're talking about stimulants, right? And part of those reasons that they're difficult to get is because people misuse them. And so, uh, not contributing to that and making it more difficult for people that need those medications to access them, um, that's not gonna help us.  [00:18:05] Peter: Well, what's interesting about that is, you know, especially, um, when you are neurodiverse, when you're a d d, when you're adhd, studies have shown you have much higher, uh, addiction prevalence, right? And, and so putting yourself deliberately, putting yourself into harm's way in that regard is something kids don't think about in their, you know, late teens, early twenties, and, You know, look down the road 10, 20, 30 years, where do you wanna be? So, there's no question about it. It's really, really cool. Camille, I, I gotta, we gotta cut it off for time, but I would love to have you back at some point. This is wonderful.  [00:18:36] Camille: Oh my gosh. I would love to come back and talk about this. Thank you so much for having, uh, a great conversation about, uh, these issues. And they're so, they're so prevalent and I, it really upsets me that we, we see this growing rather than getting better. But I think having conversations like these are the way that we end. [00:18:52] Peter: How can we, uh, how can people find you?  [00:18:54] Camille: So you can find me on any social media platform at Camille Schrier my first and last name. Uh, you can also find mr at www.camilleschrier.com.  [ www.CamilleSchrier.com @CamilleSchrier everywhere: Twitter  INSTA  FB  YouTube  LinkedIN] [00:19:04] Peter: Awesome. Camille Schrier, thank you so very much for taking the time. [00:19:07] Camille: Thank you! [00:19:08] Peter: Guys as always. We'll back next week with another amazing interview. Our thanks to our guest, Camille Schrier our thanks to Steven Byrom who produces this end every episode, and is just an awesome all around human being and I hope you have a wonderful week. We will see you guys soon. Take care. Credits: You've been listening to the Faster Than Normal podcast. We're available on iTunes, Stitcher and Google play and of course at www.FasterThanNormal.com I'm your host, Peter Shankman and you can find me at shankman.com and @petershankman on all of the socials. If you like what you've heard, why not head over to your favorite podcast platform of choice and leave us a review, come more people who leave positive reviews, the more the podcast has shown, and the more people we can help understand that ADHD is a gift, not a curse. Opening and closing themes were composed and produced by Steven Byrom who also produces this podcast, and the opening introduction was recorded by Bernie Wagenblast. Thank you so much for listening. We'll see you next week!

Better Medicine
12. Hypermobility and Ehlers-Danlos Syndrome: The Answer to Your Puzzling Symptoms?

Better Medicine

Play Episode Listen Later Oct 18, 2022 36:20


Hypermobility syndrome and Ehlers-Danlos Syndrome are among some of the most poorly understood conditions in the medical field. A significant number of patients suffer from these and often do not know where to turn to get an accurate diagnosis, much less excellent treatment for these conditions. The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins. They are generally characterized by joint hypermobility, joint instability or subluxation and dislocations, scoliosis, and other joint deformities, skin hyperextensibility, abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor. In the rarer types of EDS, there is also a weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture. The Ehlers-Danlos syndrome is currently classified into thirteen types. In all but the hypermobile subtype (hEDS) genetic variants have been identified as the cause of the disorder and are part of the diagnostic criteria. In today's episode, we discuss all this and more! We discuss: What is Hypermobility Syndrome and Ehlers-Danlos Syndrome (EDS)? What are the main mechanisms that cause it to occur? What are the various subtypes/classifications of EDS and how do we know which one it is? What do we know about the genetics and new research with EDS? How do patients with hypermobility typically present. Which providers are seeing these patients and where should the patients go to get excellent care? Guest Bio: Dr. Brianne Schroeder is originally from upstate NY where she graduated from New York Chiropractic College in 2018 with a doctorate degree in Chiropractic as well as a Master's degree in Applied Clinical Nutrition. She is trained in the Webster technique (pregnancy), certified in acupuncture, and is one of the leading practitioners performing ARPneuro therapy for pain and injuries. Growing up with a connective tissue disorder herself, Dr. Schroeder has walked the same path that many of her patients have when it comes to medical experiences and struggling to be properly diagnosed. In fact, it wasn't until her third year in chiropractic college that she was diagnosed. Ever since then, she has been on a journey to educate not only her patients, but the greater medical community about hypermobility spectrum disorders/Ehlers-Danlos syndrome. She has opened her own business so that she could spend time getting to know her patients, without the restraint of insurance companies or upper management dictating care. Dr. Schroeder is also part of the International Ehlers-Danlos Allied Healthcare Practitioner Panel and the International Ehlers-Danlos Pediatric Practitioner Panel. Connect with Dr. Schroeder Website: www.hypermobilityaustin.com Instagram: www.instagram.com/hypermobilityaustin Facebook: www.facebook.com/hypermobilityaustin Twitter: www.twitter.com/hypermobility TikTok: hypermobilityaustin Connect with Dr. Akhter

Evolving with Nita Jain: Health | Science | Self-Improvement
Utilizing Technology for Improved Health & Productivity with Avisha NessAiver of Distilled Science

Evolving with Nita Jain: Health | Science | Self-Improvement

Play Episode Listen Later Oct 13, 2022 72:22


In a world where simplicity is attractive, Avisha NessAiver, founder of Distilled Science, bucks trends while setting out to improve his health, income, & productivity by 10x. We talk about technology in our daily work lives, the importance of having a digital second brain, and the need for adequate nutrition as we age.Chapter Summaries:[00:00:00] - Avisha NessAiver is the founder of Distilled Science, a blog dedicated to science-backed optimization and performance. He is a founder, speaker, futurist, and engineer.[00:00:41] - Avisha has recently started a series where he aims to 10x his health, productivity, and income. His approach is more ambitious than practical and believes it's better to have slightly unattainable goals and fall slightly short than to have something that's consistently attainable.[00:01:53] - The 80/20 rule states that you should aim to fail at least 20% of the time for maximal learning and improvement. The best learning speed is if you understand a good percentage of a task and then fill in the gaps with practice.[00:05:40] - In the last two years, Avisha's listened to over 25 million words using the Speechify app, and he's the number one user of the app. He regularly e-mails the company about bugs in the app and they try to fix them.[00:08:43] - Notion is a notetaking app on steroids combined with a content management system that allows you to create interlinked databases. Avisha's website is built in Notion, and he plans to give people access to his digital brain as a constantly growing resource.[00:11:37] - In the information age, it's important to have a digital second brain. Avisha recommends Building a Second Brain by Tiago Forte to help people get started with setting up their own digital back brains.[00:14:39] - The education system still needs to realize that our brains are made for critical thinking, not storing facts.[00:18:57] - Fitness trackers are overused and underused. The best use of a fitness tracker is for personal tracking and motivation, not to provide ground truth values. The relative accuracy is typically a lot more reliable than the absolute accuracy.[00:21:28] - Science media outlets sometimes report relative risk reduction instead of absolute risk reduction. The dose makes the poison, and animal studies often use extremely high doses to evaluate effects of environmental toxicants.[00:24:53] - Hormesis posits that small amounts of stressors can be beneficial to the body. However, certain enzymatic pathways in your body have a finite ability to break down compounds like caffeine and cocaine. Cumulative effects matter, and stress in general can lead to excessive cortisol production.[00:30:58] - Minor to moderate alcohol consumption is associated with increased lifespan compared to complete abstinence or heavy drinking, but it's clear that any amount of alcohol is toxic to the system. Drinking facilitates social bonding, which may be accounting for the increase in lifespan.[00:36:39] - Polyphenol-rich red wine, sometimes purported to contribute to gut health, may have more adverse effects than beneficial ones.[00:39:38] - Avisha and Nita have Ehlers-Danlos Syndrome, a condition characterized by problems with the collagen production system in the body, leaving connective tissue weaker and more prone to injury. Avisha's workout protocol is to use a lot of volume at lower percentages of the one rep maximum and slowly build up towards overall muscular increases. Working out is important for people as they get older to prevent sarcopenia.[00:44:40] - As we get older, our need for protein increases due to the loss of muscle mass. Most people lose around 1% muscle mass per year after the age of 50. Gaining more muscle during your 20s and 30s will help offset this loss. 1 gram of protein per pound of body weight is a good guideline for putting on muscle mass, but it's not enough for most people.[00:46:52] - There are many reasons why protein and muscle are essential for maintaining optimal health as we age. When you have more muscle, you are better able to move your body and maintain an active lifestyle. If your muscle starts degrading, your overall lifestyle becomes more sedentary.[00:48:53] - In his science communication strategy, Avisha tries to let the sources provide the authority and translate them in a way that is accessible to someone without a scientific background. In order to film a 60-second Tik Tok video, he spends hours reading through research papers. He plans to create more long-form content and believes personalized, targeted interventions are the future of medicine.[00:56:29] - The government is the single largest payer that will benefit from a preventative approach. The change will likely happen through the payers that are more agile and backed by things like insurance companies and large employers who will be incentivized to have a healthier employee base.[00:58:55] - There needs to be a shift in medical education towards preventative approaches rather than exclusively operating under a “diagnose then drug” paradigm. Western medicine system is very good at treating acute problems, but chronic conditions like fibromyalgia can have multiple root causes. Functional medicine doctors are known for looking at holistic approaches.[01:02:28] - Avisha tries to find a middle ground between the traditional and alternative medicine camps and believes there needs to be greater oversight in the functional wellness space. In its current form, FMT lacks standardization. Some microbes might be beneficial in one body and not in another.Connect with Avisha on TikTok & Instagram! If you enjoyed this episode, you can support the show. Thanks for listening! This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit nitajain.substack.com

That's So Chronic
Finn Iles/Violet Tendencies & Hypermobile Ehlers Danlos Syndrome (hEDS)

That's So Chronic

Play Episode Listen Later Oct 10, 2022 56:40


Happy Tuesday! Today I am chatting to Finn Iles/Violet Tendencies all about her diagnosis of hypermobile ehlers danlos syndrome (hEDS), as well as a variety of comorbidities that come along with this. In this episode, Finn explains the journey to get to a diagnosis (which is still continuing!), what on earth EDS is, and how medicinal cannabis has helped her symptoms. Finn also takes us through the amount of advocacy work, research, and time they have had to do in order to get to where they are now, and the plans for the future support. Please note we do talk about some elements of the NZ health system that may be different now due to the reform, or not applicable to where you are based. Connect with Finn over on IG: @violetyouareturningviolet And you can find me on IG & Tiktok: @thatssochronic I would also really appreciate a rating or a review wherever you're listening to this pod! That really helps TSC reach more ears around the world - so thank you! @thatssochronic | @jessssbrien | #thatssochronic Free monthly newsletter: thatssochronic.substack.com Application form to share your story: https://forms.gle/csebLkwfwAjiLApK9 Disclaimer: Here at That's So Chronic we are sharing personal stories and are not advocating any type of treatment, therapy, procedure or intervention. Everyone is unique so please seek professional medical advice before making any decisions for yourself or for others. Hosted on Acast. See acast.com/privacy for more information.

The Ultimate Dance Business Podcast
Could bees could be the business mentors we didn't know we needed? An interview with Paula Carnell

The Ultimate Dance Business Podcast

Play Episode Listen Later Oct 7, 2022 50:27


Paula Carnell is a Bee expert and Honey sommelier. Working with companies and landowners around the world to keep bees in a sustainable way. Through her own remarkable health recovery experience from a genetic connective tissue disorder, Ehlers Danlos Syndrome,(EDS) she realised that what was killing the bees was also killing us. Using herbal medicine and plant based minerals, she has now been fully recovered since 2015 and her new life with bees began. Paula started her first business in 1990, as an Artist and exhibited globally. She also had a greeting card publishing business, ‘Possi', and her own Gallery in the Somerset town of Castle Cary. She lost this business aged 40 when she became bed & wheelchair bound with EDS. Once recovered she had a new mission to share the wisdom of the bees using naturopathic methods of bee management. Using no chemicals inside or around the hive, not using smoke, or feeding bees sugar, she raises healthy, and happy native bees. With her experience of building two 6 figure businesses with teams of several people, she has amassed much business experience which she willingly shares. Her passion is to be an embodiment of success to inspire others to follow their dreams and create a happier and healthier world. Paula has two published books, ‘Artist to Bees', and ‘A Quest for bees in Bhutan'with two further books in the pipeline. A regular guest on podcasts, speaking events including TEDx, and the head Beekeeper of ‘The Newt in Somerset' Paula has become the ‘go to' ‘Bee Lady'. You can find out more about Paula at: https://keap.page/ug312/link-bio-page.html https://www.instagram.com/paula.carnell/ Thank you for listening. This show is brought to you by Dance Business Lab. Dance Business Labs founder Deborah Laws is a multi-passionate dancepreneur, dance business expert and number one best selling author of The Ultimate Dance Business Planner. Deborah's sole purpose is to help facilitate the personal journey and growth of dance business owners like you. Through Dance Business Lab membership and coaching programmes Deborah aims to empower you to learn more, implement new exciting strategies, create goals which Deborah will keep you accountable to and teach you leadership skills that will sky rocket your team and families to truly become your dream school. To find out more about Dance Business Lab and work with Deborah head to https://dancebusinesslab.com To pick up your copy of The Ultimate Dance Business Planner click this link https://dancebusinesslab.com/planner To find out more about working with Deborah through her exclusive Dance Business Lab membership programs follow the links below. Sparks membership - https://dancebusinesslab.com/membersh... Ignite membership - https://dancebusinesslab.com/membersh... Illuminate membership - https://dancebusinesslab.com/membersh... This episode of The Ultimate Dance Business Podcast is brought to you by DanceBiz from ThinkSmart Software. Take your studio to the next level. DanceBiz is a state of the art software package that takes the headache out of admin. Automate all those business tasks you hate, and spend more time on what matters - teaching. Try it today and regain control of your business. To get an exclusive code to give you access to 2 months of DanceBiz for free drop me a message at https://dancebusinesslab.com/contact If you love the show and you would like to support then why not buy Deborah a coffee simply head to http://buymeacoffee.com/DeborahL

Chronic Victory Podcast
Chronic Victory Podcast #70 - When Life gets Tough

Chronic Victory Podcast

Play Episode Listen Later Oct 5, 2022 62:58


When life gets tough, what then? Well gentle listeners, in you there is strengths that enables us to bear up with difficulties of every kind.  Instead of meeting misfortune with groans and tears, respond by calling upon the faculty specifically provided to deal with it.  What else is a product of philosophy & God?Thank YOU for being with me today! YOU are appreciated!Contact Info:Instagram:  @chronicvictorypodcastEmail:  chronicvictorypodcast@gmail.com*All affiliate links are currently down.*Music credits (not in order of appearance):"Solas Composer - Rising Prophecy" is is under a Creative Commons (CC BY-SA 3.0) license.http://creativecommons.org/licenses/https://soundcloud.com/solas_composerMusic promoted by BreakingCopyright: https://youtu.be/oDITlsMhumkSong: Tunetank - Planet Zero (No Copyright Music)Music provided by Tunetank.Free Download: https://bit.ly/3zh8ACD Video Link: https://youtu.be/Ajb_nIwKDhYSong: Tunetank - Forgotten Land (No Copyright Music)Music provided by Tunetank.Free Download: https://bit.ly/3b1QISb Video Link: https://youtu.be/8mlCzPhHQNo"Art of Silence - by Uniq" is under a Creative Commons license (Creative Commons – International Recognition 4.0 – CC BY 4.0)Song: "Fathom"Released on: 2021-01-15Main  Artist: Kyle PrestonComposer: Kyle PrestonSupport the show

Inspired Money
Everything You Need Is Within With Gigi Robinson

Inspired Money

Play Episode Listen Later Oct 1, 2022 62:38


Episode 253: Full-time influencer Gigi Robinson talks about building a brand including money tips for influencers, how to land bigger brand deals, and strategies for getting paid what you're worth. Guest Biography Gigi Robinson is known for many things. From being a finalist in the Sports Illustrated Swim Search, to her advocacy in the chronic illness and body positivity spheres, all the way to NFT research and navigating life as a small business owner. She truly does it all. With features in Bustle, Business Insider, Forbes, and Vogue Business, Gigi combines beauty and brains as GenZ's forefront thought leader in the content creation space. Having been diagnosed with Ehlers Danlos Syndrome at the age of 14, Gigi knows how hard it is to be different. However, her lively spirit, positive demeanor, and elevated work ethic have made her and her Spotify Live Podcast “Everything You Need Is Within” an instant hit. Listeners of her podcast have the opportunity to learn how to become their own advocates, challenge the status quo and dominate in professional settings. Gigi truly has everything you need to unlock your inner girl boss. When she is not working on her podcast or posing for national campaigns, Gigi can be found working on her newsletter, “The Creator Chronicles.” Her latest project is aimed at documenting life as a young woman with a chronic illness and unlocking behind-the-scenes tips and tricks for rising content creators. With so much more on the horizon including an upcoming speaking tour, creative production for brands, advising brands and a top-secret book project, Gigi, Robinson is just getting started. This episode is brought to you by Yaahdy.com, my source for Blue Mountain Coffee and other unique Jamaican products. Use discount code 'money' for 10% off your entire order.    In this episode, you'll learn: Money tips for influencers – that means managing money, taxes, and retirement planning. Tips for landing bigger brand deals About influencer pricing and strategies for getting paid what you're worth. Show notes: http://www.inspiredmoney.fm/253 Find more from our guest: www.gigirobinson.com TikTok Instagram LinkedIn YouTube Twitter Mentioned in this episode: Ronald McDonald House Charities ImageMakers Program USC Reach - social media club LANEIGE Lip Mask f*** you pay me app www.claraforcreators.com   Thanks for Listening & Watching! To share your thoughts: Leave a note in the comment section below. Share this show on Twitter or Facebook. Join us at the Inspired Money Makers groups at facebook and LinkedIn To help out the show: Leave an honest review on Apple Podcasts, Podchaser.com, or wherever you listen. Your ratings and reviews really help, and I read each one. Subscribe on Apple Podcasts and YouTube.

Hypermobility Happy Hour
51 - Christie Cox - Her Advocacy Practice & New Book Holding it All Together When You're Hypermobile

Hypermobility Happy Hour

Play Episode Listen Later Sep 30, 2022 78:49


Christie Cox is a patient advocate who was diagnosed with hypermobile Ehlers-Danlos Syndrome after a 17 year quest to find answers. Christie just published a fascinating book called Holding it All Together When You're Hypermobile: Achieving a Better Life Experience with EDS, POTS, & Joint Instability and she has a patient advocacy practice that offers free initial consultations and other great content on her website. Christie's book explores the basics of hypermobile EDS, its common comorbidities, tips on getting diagnosed, coping strategies, lifestyle changes, and tons of other resources on how to get help. Check out her website for more free resources for EDS patients. The book also delves into the future of scientific medical research, in search of tools for earlier diagnosis and treatment, and how to foster a positive mindset in the face of despair. Links: Holding it All Together Book: https://www.holdingitalltogether.com/ Christie Cox's Patient Advocacy: https://www.journey2joyous.com Scheduling A Free Initial Consultation: https://calendly.com/journey2joyous/15min

The Genetics Podcast
EP 85: Dr Jessica Kissinger on large-scale parasite genomics and the power of multi-omic data

The Genetics Podcast

Play Episode Listen Later Sep 29, 2022 33:55


Dr Jessica Kissinger and her collaborators run some of the world's largest databases of multi-omic data from eukaryotic parasites. In this episode, we explore major findings in the field and Dr Kissinger's vision of large-scale interoperable datasets driving novel discoveries. Plus, Dr Kissinger shares her recent and personal experience of diagnosis with a rare disease, Ehlers-Danlos Syndrome, that puts everything into perspective.

Living Well with Lipedema
Starter Yoga for Lipedema

Living Well with Lipedema

Play Episode Listen Later Sep 25, 2022 8:14


In this episode, Shoosh Crotzer talks about the advantages of yoga for the lymphatic system how it may help manage Ehlers Danlos Syndrome. Mentioned in this episode: Lipedema & Lymphedema Heart to Heart: A Collaborative 3-Day Learning Event Join us for three days full of immersive learning and discover cutting-edge holistic strategies that would help to drastically improve your health... and your quality of life. https://lipedema.captivate.fm/heart2heart (Join our Event!)

the10ninety
Episode 9

the10ninety

Play Episode Listen Later Sep 22, 2022 39:34


Sam and Mason sit down with Brooke Pando as she discusses the obstacle of having their daughter Londy suffer from Ehlers Danlos Syndrome type 6a. Their attitude and perserverance is inspiring. Thank you to our sponsors! 

Staying Connected
Sarah Fulop

Staying Connected

Play Episode Listen Later Sep 17, 2022 42:42


Sarah Fulop was diagnosed with VEDS, or vascular Ehlers-Danlos Syndrome, after her sister died from complications following a pregnancy. Her brother also died of an aortic dissection at age 15, when she was about 3 years old. While her family is in some ways the textbook case of VEDS, they inherited the condition through a … Continue reading Sarah Fulop

Bowel Moments
Meet Tina of Own Your Crohn's Fame!

Bowel Moments

Play Episode Listen Later Aug 31, 2022 74:56


We were so excited to talk to Tina Aswani Omprakash this week! Tina is a powerhouse in our community and we loved hearing her IBD story and all of the awesome things she's been working on- and despite the super-sized episode, we just scratched the surface! We talked to her about her very complicated Crohn's and her other autoimmune conditions. We talked about her family history of IBD and how her culture shaped her disease journey and eventually motivated her to speak out via her popular blog called "Own Your Crohn's."  After she started speaking out more publicly, more and more people of  South Asian descent and even further afield started reaching out and thanking her for helping to demystify and destigmatize IBD. That prompted her to start a social media group (IBDesis) and the success of that motivated her and her team to start the South Asian IBD Alliance. We were so excited to hear about SAIA's mission and their amazing progress in such a short time.We also talked to her about how she manages her symptoms with a team of folks including a therapist, pelvic floor physical therapist, acupuncturist, and more.  Her team helps her maintain her holistic wellness as well as her disease. We know you'll be just as riveted as we were by Tina's story and all her accomplishments. Thanks to our sponsor- Romanwell!Follow us on Instagram!Follow us on Facebook!Follow us on Twitter! Links: An article on Pelvic Floor PT and IBD- American Physical Therapy AssociationPelvic Floor Dysfunction and IBD video- Own Your Crohn's Blog/Crohn's & Colitis Foundation  Information on Paralytic Ileus- Cleveland ClinicInformation on Ehlers-Danlos Syndrome type 3- Ehlers-Danlos Support UKJournal Article on Culturally Competent Care for South Asian Patients with IBD- Journal of Crohn's & Colitis Journal Article- "Hospitalization Experiences and Post-Traumatic Stress in IBD: Opportunities for Change"- Authored by friends of the show- Dr. Tiffany Taft, Josie McGarva, and Tina! - Inflammatory Bowel Diseases

The Cabral Concept
2389: Children's Orthodontics, Rest after Eating, Ehlers-Danlos Syndrome, Histamine Gene, Supplements & ACV, CBO & Nutrition (HouseCall)

The Cabral Concept

Play Episode Listen Later Aug 21, 2022 22:19 Very Popular


Thank you for joining us for our 2nd Cabral HouseCall of the weekend! I'm looking forward to sharing with you some of our community's questions that have come in over the past few weeks…   Deanna: I am currently weighing my options for correcting my 5-year old daughter's cross bite - our holistic dentist recommends an ALF appliance while the orthodontist we consulted with speaks very highly of a Hang Expanser. I didn't realize until recently just how much asymmetry in the mouth/jaw can really effect overall wellness. I want to make sure that I make the best choice for her long-term health. Do you have any insight into the world of orthodontics/myofacial therapy that could help me better make that decision? Maybe you have seen clients in your practice with one or both of these appliance? Any materials/book recommendations that you have found insightful on this subject? Thank you so much!   Patty: Most health practitioners say that after eating one should not lay down, but too take a short walk or some type of light exercise. I know that the digestion process goes to processing a meal after eating and we feel sleepy. Most animals sleep after eating. Shouldn't we honor our body signals and rest for a short time after eating, so that our body's can concentrate on the processing of the food?   Erin: Hi Dr. Cabral, I recently was diagnosed with Ehlers Danlos Syndrome, which I believe was caused by my chronic Lyme disease. My question is, is this something I can get into remission like my Lyme? I'm most worried about this affecting me and a future child in pregnancy. Thank you so much!!   Anette: Hi Dr. Cabral, long term podcast listener and ayubowan member. Love all your podcast and the information you share. I have two questions, In your book and on previous podcasts , you've mentioned that you have specific gene mutations that cause certain issues like histamine overproduction. How can I find out if I have certain mutations? Is there a genetic test I can run? You seem to know so much about how your genes effect you and how to control them so they won't express themselves. I know this information would help me tremendously as well. Also what are some supplements you would recommend for killing/getting rid of unwanted bacteria in the body? Are cat's claw and oil of oregano effective? If so what are the dosages you recommend for adults.   Jen: Hi Dr C! I recently started drinking a glass of water w/ apple cider vinegar before I drink my morning smoothie. I've heard it helps with the blood sugar spikes to drink this prior to meals. I've been taking my morning supplements with my glass of water/ACV. Is there an issues you see in combining my supplements with the ACV? Thank you!   Audrey: Hi Dr. Cabral, I would like to do the CBO protocol but I know the food list is very restricted. I am training for races except for a few months out of the year then I start training for the next race season. On long rides I like to take hummas, cliff block chews, picky bars etc for nutrition which is obviously not on the food list. How can I do the CBO protocol while keeping up my nutrition on long runs/rides? You are truly brilliant and I appreciate all that you do.   Thank you for tuning into this weekend's Cabral HouseCalls and be sure to check back tomorrow for our Mindset & Motivation Monday show to get your week started off right!   - - - Show Notes and Resources: StephenCabral.com/2389 - - - Get a FREE Copy of Dr. Cabral's Book: The Rain Barrel Effect - - - Join the Community & Get Your Questions Answered: CabralSupportGroup.com - - - Dr. Cabral's Most Popular At-Home Lab Tests: > Complete Minerals & Metals Test (Test for mineral imbalances & heavy metal toxicity) - - - > Complete Candida, Metabolic & Vitamins Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Complete Stress, Mood & Metabolism Test (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Complete Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Complete Omega-3 & Inflammation Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - Get Your Question Answered On An Upcoming HouseCall: StephenCabral.com/askcabral - - - Would You Take 30 Seconds To Rate & Review The Cabral Concept? The best way to help me spread our mission of true natural health is to pass on the good word, and I read and appreciate every review!

Sales vs. Marketing
Gigi Robinson - Full-Time Content Creator | Body Positivity & Chronic Illness Advocacy

Sales vs. Marketing

Play Episode Listen Later Aug 21, 2022 83:15


➡️ Like The Podcast? Leave A Rating: https://ratethispodcast.com/successstory   ➡️ About The Guest⁣ Gigi Robinson is a popular digital content creator, digital artist, chronic Illness & mental health advocate, and a Sports Illustrated Swim Model from America. She has been seen many times appearing for an Interview the Fox News, Forbes, and many other famous news publishers. Gigi is known for many things. From being a finalist in the Sports Illustrated Swim Search to her advocacy in the chronic illness and body positivity spheres, all the way to NFT research and navigating life as a small business owner.  She truly does it all. With features in Bustle, Business Insider, Forbes, and Vogue Business, Gigi combines beauty and brains as GenZ's forefront thought leader in the content creation space. Robinson is a natural inspiration to her viewers. Having been diagnosed with Ehlers Danlos Syndrome at the age of 14, Gigi knows how hard it is to be different. However, her lively spirit, positive demeanor, and elevated work ethic have made her and her Spotify Live Podcast “Everything You Need Is Within” an instant hit. Listeners of her podcast have the opportunity to learn how to become their own advocates, challenge the status quo and dominate in professional settings. Gigi truly has everything you need to unlock your inner girl boss. ➡️ Show Links https://www.instagram.com/itsgigirobinson/ https://twitter.com/itsgigirobinson/ https://www.gigirobinson.com/   ➡️ Podcast Sponsors HUBSPOT - https://hubspot.com/ ➡️ Talking Points⁣ 00:00 - Intro 03:37 - Gigi Robinson's origin story 04:53 - When did Gigi start working? 10:21 - Overcoming your insecurities 15:09 - How did Gigi have self-awareness and figure out her “why” at such a young age? 17:32 - When did Gigi Robinson's hobby become her passion? 24:36 - Why do people hesitate to put themselves out there? 29:45 - Quitting your job and starting up your own company 37:52 - Monetizing your content 42:10 - Gigi Robinson's content mechanism 48:42 - Opportunities on different platforms 51:11 - How does Gigi navigate through creative burnout? 55:46 - The biggest stress Gigi faced as a full-time content creator 1:00:52 - Advice for the people who are negotiating with bigger brands 1:04:43 - Where do people start with PR? 1:09:18 - What advice would Gigi give to new content creators? 1:13:33 - What impact does Gigi want to have on the world through her content? 1:15:05 - Where can people connect to Gigi Robinson? 1:15:54 - What keeps Gigi up at night? 1:17:02 - The biggest challenge Gigi faced in her life 1:18:20 - A person who has had a major impact on Gigi's life 1:19:21 - Gigi Robinson's book or podcast recommendation 1:20:02 - What would Gigi Robinson tell her younger self? 1:21:02 - What does success mean to Gigi Robinson? Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hypermobility Happy Hour
50 - Dr. Pradeep Chopra (Part 2) POTS, MCAS and More

Hypermobility Happy Hour

Play Episode Listen Later Aug 20, 2022 95:00


Part 2 in our series of interviews with Dr. Pradeep Chopra, renowned specialist in treating pain and the various co-morbidities and symptoms that occur in people with Ehlers-Danlos Syndrome and other conditions involving chronic pain. This episode centers on mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). www.painri.com

Better Daily Shortcast
210 - My Ehlers Danlos Syndrome

Better Daily Shortcast

Play Episode Listen Later Aug 19, 2022 20:55


Flex Friday Coach Alex spends some time opening up about what it's like to live with Ehlers Danlos and encourages those who are carrying a heavy load. Read his story published on the EDS Society Webpage:https://www.ehlers-danlos.com/my-awareness-mission/ Don't carry your cross alone! https://betterdaily.live

Physio Explained by Physio Network
#49 - ​​Assessment and management of Hypermobility and Ehlers-Danlos Syndrome

Physio Explained by Physio Network

Play Episode Listen Later Aug 10, 2022 18:25


In this episode with Dr Chen we discuss new diagnostic criteria of Hypermobility and Ehlers-Danlos Syndrome and how they live on a spectrum. We covered what to look out for both subjectively and objectively, as well as the common comorbidities that a patient could present with and how to manage these.Dr Chen completed her PhD at the University of Queensland in 2017 on neck pain in office workers. She has since transitioned to clinical and educational work with special interests in those with chronic pain and fatigue, dysautonomia, Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.Read Chen's Research Review on Symptomatic Joint Hypermobility here - https://www.physio-network.com/research-reviews/other/symptomatic-joint-hypermobility/Our host is Michael Rizk from Physio Network and iMoveU: https://cutt.ly/ojJEMZs 

Hypermobility Happy Hour
48 - Mitch Martow: Bend or Break Documentary and Life with EDS

Hypermobility Happy Hour

Play Episode Listen Later Jul 22, 2022 67:19


Trigger Warning: This episode contains discussion of suicidal thoughts and suicide. Please exercise listener discretion and if this episode isn't for you for any reason or if you are listening with children, please skip it, we've got some great new episodes coming out soon. If you are struggling with suicidal thoughts, please seek assistance. You are worthy and deserving of help and help is out there even though it is often very difficult to find. Feel free to email hypermobilityhappyhour@gmail.com and we can help you to find a patient advocate (or just chat or help you to find a support group or other resources) but this email is not actively monitored and is not for emergency situations. On this episode, our guest is is a fascinating patient advocate who recently participated in a documentary called Bend or Break which documents his patient experience with Ehlers-Danlos Syndrome. Mitch Martow started his blog Bend or Break on 2010 to document his struggle with the condition and filmmakers used his blog to write and produce a documentary about Mitch's experience which was recently released and is available to watch for free on YouTube. This episode was recorded before the episode was released. Links: (Trigger Warning: these links contain discussion of suicide and other challenging topics, please exercise viewer/reader discretion): Bend or Break Documentary on YouTube: https://www.youtube.com/watch?v=OMCPfVCAIM8 Mitch's TedX Talk: https://www.youtube.com/watch?v=OMCPfVCAIM8 Mitch's YouTube page: https://www.youtube.com/channel/UCodj1ddsIFPN90-jyExje8w POV Magazine article: https://povmagazine.com/bend-or-break/ Mitch's Bend or Break Blog: http://breakorbend.blogspot.com/ Instagram: https://www.instagram.com/_bend_or_break_/ Instagram: https://www.instagram.com/mitchmartow/?hl=en Facebook: https://www.facebook.com/mitch.martow

Spoonie Pyjama Party
'I hated myself': becoming chronically ill at 12

Spoonie Pyjama Party

Play Episode Listen Later Jul 20, 2022 52:19


“I just hated myself. I really hated myself. My body kept failing me. And so I couldn't do all the things that I so desperately wanted to do. I couldn't be a part of friendship groups. I couldn't go out. I couldn't do anything. This thing, my body, which is supposed to get me from point A, point B, it's supposed to be on my side. It just kept on failing.”That’s Natasha Misri, one of my oldest and dearest friends, and my guest for today’s episode. Natasha and I went to school together - we met when we were about 13 and became friends sitting at the back of the lab and grumbling our way through GCSE physics classes.Looking back, neither of us can quite remember how or why we clicked, we just did. We got each other, not because we went to the same school or because we didn’t particularly enjoy physics. Over time, it turned out that there was something deeper to our friendship. Natasha was diagnosed with ME when she was 12, and we’ve talked a lot over the years about what being ill as a child looked like for us. About how it’s shaped us and the imprints it’s left on our personalities. We’ve also pondered a lot about what it must have been like for our parents to watch the person they love the most in the world suffer and not be able to do anything about it. And that’s the theme of today’s show. Being sick as a child is difficult to explain if you’ve never experienced it. You feel different. You are different. But you so desperately want to be the same as everyone else in your class. It’s hard enough being a kid (especially a teenager) when you’re learning about the world and your place in it - but when you add to that a diagnosis (or a lack of one), constant hospital appointments, weeks and months of missed school, and friendships that feel like they’re balancing on a knife’s edge - it can, at times, feel like it’s too much for one child to take. I went through school living with undiagnosed Ehlers-Danlos Syndrome, and whilst it was a challenge, my experience was still relatively “normal” compared to Natasha’s. So, I'm really pleased to have her on the podcast today. In this incredibly personal and emotional episode, she shares her story, and reflects on what it’s like getting sick when you’re so young, and the impact it has had on everything from her education and her relationships, to how she thinks about herself, even now. To listen, you can just click play at the top of this email, or you can listen on Apple, Spotify, Amazon and Google. If you’d rather read the transcript of the episode, I’ve made that available on my blog.A huge thank you to Natasha for sharing her story. She’s not an online person so doesn’t have anything to plug, but you can find more information about ME via Action for ME and The ME Association.A big thanks to my friends at Phlo for supporting this episode. They’re the online pharmacy that makes ordering your medication easy. Visit wearephlo.com or download Phlo on your favourite App Store to manage, track, and have your medication delivered at the touch of a button.Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music. If you want to support The Rest Room, please consider becoming a premium subscriber here. Get full access to The Rest Room at natashalipman.substack.com/subscribe

Hypermobility Happy Hour
45 - Isobel Knight (UK) on Decades of Work Studying and Writing Books on Hypermobility

Hypermobility Happy Hour

Play Episode Listen Later Jun 11, 2022 73:47


On this episode, Kerry interviews Isobel Knight, a writer, researcher and lecturer on hypermobile Ehlers Danlos Syndrome. She was also a practitioner of the Bowen technique--a gentle form of soft tissue therapy from Australia for 17 years. Isobel unfortunately medically retired in 2017.. Isobel is the author of 'A Multidisciplinary Approach to Managing Ehlers-Danlos (Type III) - Hypermobility Syndrome' and she co-wrote, with John Wilks, 'Using the Bowen Technique to Address Complex and Common Conditions.' Isobel first published the book, 'Hypermobility Syndrome - bending without breaking' that became so successful it was changed into a second edition in 2016, and contains 5 new chapters. Isobel also had a narrative medicine and EDS article published in the prestigious American Journal of Genetics in 2015. Isobel also worked with Dr. Carol Clark at the University of Bournemouth on research into a humanistic framework for managing EDS which culminated in a paper published in December 2017 in the Journal of Qualitative Studies of Health Well-Being. Isobel has been published in the British Medical Journal and has lectured extensively across the United Kingdom. Links: https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.c.31428 Twitter: https://twitter.com/isobelknight2 https://www.hachette.co.uk/titles/isobel-knight-2/a-multidisciplinary-approach-to-managing-ehlers-danlos-type-iii-hypermobility-syndrome/9781848190801/

The Nugget Climbing Podcast
EP 120: Lea Volpe — The World of Paraclimbing Competitions, How We Perceive Wheelchairs, and Empathy in Coaching

The Nugget Climbing Podcast

Play Episode Listen Later May 30, 2022 140:09


Lea Volpe is a paraclimber for Great Britain and a 2x medalist at the IFSC Paraclimbing World Championships. Lea holds down a 9-5 job working in health policy, coaches junior athletes, and is essentially a professional climber on the side. We talked about paraclimbing competitions, being diagnosed with Ataxia, how we perceive wheelchairs, empathy in coaching, and much more.Check out Grasshopper Climbing!grasshopperclimbing.cominstagram.com/grasshopperclimbingTell them I sent you to save $500 off a fully kitted out 8'x10' Grasshopper board! Check out Rhino Skin Solutions!rhinoskinsolutions.comUse code “NUGGET” at checkout for 20% off your next order!We are supported by these amazing BIG GIVERS:Leo Franchi, Michael Roy, David Lahaie, Robert Freehill, Jeremiah Johnson, Scott Donahue, Eli Conlee, Skyler Maxwell, and Craig LeeBecome a Patron:patreon.com/thenuggetclimbingShow Notes:  thenuggetclimbing.com/episodes/lea-volpeNuggets:0:07:04 – Getting over covid0:08:06 – A normal weekday in Lea's life0:11:32 – How Lea recharges her mental batteries0:14:14 – Balancing an intellectual and sedentary job with the physical activity of climbing0:16:54 – How most climbers feel guilty for taking downtime0:18:59 – Lea's energy reserves, and learning to budget her energy0:21:28 – An introduction to paraclimbing, Lea's disability of Ataxia, and strategies she uses to climb around a coordination and balance impairment0:26:32 – Why Lea uses a wheelchair day-to-day, and climbing with her disability0:31:33 – Experiencing imposter syndrome as a strong para athlete0:34:04 – How climbing levels the playing field, and how many of us start at V00:36:58 – Failure is part of climbing0:39:06 – Lea's life as a kid and teenager, and getting diagnosed with Ataxia and Ehlers Danlos Syndrome in her early 20s0:44:21 – How Lea discovered climbing0:46:10 – How we perceive people in wheelchairs, and feeling self-conscious at the climbing wall0:53:00 – What we can learn from Lea in regards to how we think about disability0:58:01 – The paraclimbing competition format, and some of the different athlete categories1:02:04 – Climbing to be in the paraolympics, and classification systems1:07:03 – How athletes get assessed to determine their classification1:17:35 – How route setters influence competition outcomes, and setting guidelines in paraclimbing competitions1:20:47 – Working with a coach vs. being self-coached1:24:51 – Keeping training sustainable1:28:49 – What a “bad day” looks like for Lea1:35:48 – How Lea got into coaching1:42:24 – What Lea hopes to pass on to the kids she coaches, and the role of coach/teacher1:48:10 – Having the questions vs. asking questions, and qualities that make a good coach1:51:40 – Empathy in coaching, and how climbing brings out our deepest and darkest fears1:56:12 – Inspiration porn and how it can reduce people down to a tool, and how Lea wants to use her platform2:02:42 – The barriers involved in climbing outdoors2:13:22 – What's next for Lea

Backpacker Radio
#150 | Caet Cash on Peak Bagging in the Appalachias, Southbounding, and Ehlers-Danlos Syndrome

Backpacker Radio

Play Episode Listen Later May 23, 2022 127:15 Very Popular


In today's episode of Backpacker Radio presented by The Trek brought to you by Goodr, we are joined by Caet Cash.  Caet first discovered backpacking back in 2014 and has been on an absolute tear ever since.  We chat about why she prefers to hike SOBO, including some SOBO specific elements of both the AT and PCT, her insane list of peakbagging feats in the Adirondacks and southern Appalachians, redlining (aka mapping) the Smokies, and much more.  Caet also details how her backcountry goals have shifted since being diagnosed with Hypermobile Ehlers Danlos Syndrome, how she manages EDS, and why she thinks it's important to be vocal about this chronic condition.   We wrap the show with an overview of our AT road trip thus far including Chaunce's absurd sun burn, a triple crown of emotional high points on trail, a listener voicemail, and a listener educates us on the Philmont Poop Rating. Goodr: Use code “backpacker15” for 15% off at goodr.com/backpacker15. Gossamer Gear: Use code “littledonkeygirl” for 15% off at gossamergear.com.  Greenbelly: Use code “trek2022” for 10% off at greenbelly.co.   Interview with Caet Cash Caet's Instagram Article about Caet & the SB6K Time stamps & Questions 00:04:32 - QOTD: What's been the best part of the road trip thus far? 00:14:53 - Introducing Caet 00:15:10 - Discussion about Caet's trail name. 00:16:03 - What's the origin of your trail name? 00:18:37 - How mad are you going to be about Zach's pronunciation of Appalachian? 00:19:02 - Do you remember where you first met Zach? 00:21:07 - Tell us your backpacking resume. 00:22:45 - Tell us about the Northville Placid Trail. 00:24:26 - What's the best season to do the Northville Placid Trail? 00:25:45 - Do most people start in Northville? 00:26:00 - What type of wildlife do you see? 00:27:05 - Have you done any of the Finger Lakes Trail? 00:27:52 - What put the Appalachian Trail on your radar and why did you choose southbound? 00:29:19 - Was your marathon pain related to your future diagnosis? 00:30:10 - Anything else you want to share from the AT? 00:32:25 - Chaunce's story. 00:34:52 - At one point did you feel like you got into the hiking rhythm? 00:38:20 - Does any part of the trail feel hard after you've completed the Whites? 00:39:30 - Anything else you want to share from the CT? 00:40:36 - Tell us about connecting your footsteps on the PCT. 00:43:54 - How did you decide to go southbound on the PCT? 00:44:30 - How did you handle sleeping alone? 00:46:35 - How many times have you seen bears at night? 00:47:30 - Discussion of purism differences between the AT and PCT. 00:48:35 - When did you finish the PCT and what was the Sierra like? 00:50:15 - Tell us about what you thought of the PCT views and scenery. 00:52:02 - Do you prefer the scenery of the AT? 00:53:20 - Do you think list-making is more of a personality trait of people in the Northeast? 00:54:11 - Tell us about the South Beyond 6,000 grid. 00:55:36 - Can you give us more detail on the SB6K guidelines? 00:57:14 - What's your strategy in accomplishing the SB6K? 00:58:14 - How do you hike all of them in a month? 00:59:25 - What are your top 3 favorite peaks from the SB6K? 01:00:49 - Tell us about the Adirondack 46. 01:02:03 - How many of the SB6K peaks are accessible from or on the AT? 01:03:03 - Have you done Mt. Rogers? 01:03:47 - If there's no view, is the appeal strictly accomplishing the list? 01:04:20 - Has anyone else done the SB6K grid? 01:07:02 - Tell us about redlining the Smokies.  01:09:12 - How much do you have to plan for a redlining project versus winging it? 01:09:41 - Are there any resources for helping someone plan a redline? 01:10:45 - How long did it take you to redline the Smokies? 01:11:44 - Tell us about your hip injury. 01:16:01 - Tell us about Hypermobile Ehlers Danlos Syndrome. 01:18:19 - Have you ever dislocated your shoulder? 01:19:01 - What differentiates this disease from someone with other flexibility or hypermobility? 01:19:41 - How do you cope with or reduce chronic pain? 01:22:22 - How has EDS modified your future plans or goals? 01:24:29 - How common is EDS? 01:25:51 - What else in your lifestyle has changed to pursue your health goals? 01:27:18 - Has it been tough to recalibrate your goals? 01:28:28 - Did you ever wonder if your pain was similar to other hikers'? 01:29:58 - Would cycling be a possible activity for you? 01:31:52 - Tell us about your sister and hiking with her. 01:32:55 - What's your big 3 these days? 01:34:14 - Hype up van life for us. 01:36:18 - What do you want to share about guiding? 01:37:12 - How did you like working with Jennifer Pharr Davis? 01:38:00 - Anything else you want to share? 01:39:08 - Thank you! SEGMENTS Trek Propaganda Woman Rescued After Falling Headfirst Into Pit Toilet Trying to Retrieve Phone by Penina Satlow Triple Crown of emotional high points on trail Listener Voicemail Mail Bag 5 Star Review [divider] Check out our sound g uy@Paulybooyshallcross. Subscribe to this podcast on iTunes (and please leave us a review)!  Find us on Spotify, Stitcher, and Google Play. Support us on Patreon to get bonus content. Advertise on Backpacker Radio Follow The Trek, Chaunce, Badger, and Trail Correspondents on Instagram. Follow The Trek and Chaunce on YouTube. Follow Backpacker Radio on Tik Tok.  A super big thank you to our Chuck Norris Award winner(s) from Patreon: Andrew, Austen McDaniel, Jason Lawrence, Christopher Marshburn, Sawyer Products, Brad and Blair (Thirteen Adventures), Patrick Cianciolo, Paul Packman Sealy, Matt Soukup, and Jason Snailer. A big thank you to our Cinnamon Connection Champions from Patreon: Liz Seger, Cynthia Voth, Emily Brown, Dcnerdlet, Jeff LaFranier, Peter Ellenberg, Jacob Northrup, Peter Leven.

PodcastDX
Crohn's and Gastroparesis With Anna

PodcastDX

Play Episode Listen Later May 10, 2022 40:40


This week we are talking once again with Anna, this time about Crohn's Disease and Gastroparesis.  Anna is a 35 year old female who has an independent spirit inside of a body that holds an alphabet of health conditions. Anna worked as a case manager for individuals with intellectual and developmental disabilities where she loved to advocate for her clients. When her health forced her to take a step back from working things have been rough as she looks for a new way to advocate for herself and for others. She has struggled with different health issues most of her life but the battle that lead to her to become disabled started in July of 2018. Currently she has been diagnosed with Ehlers Danlos Syndrome, Gastroparesis, POTS, MS, Addisons, Crohn's, Hypoglycemia, MCAS, TPN dependent, Failure to thrive and more.  Crohn's disease is a type of inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. This inflammation often spreads into the deeper layers of the bowel. Crohn's disease can be both painful and debilitating, and sometimes may lead to life-threatening complications. While there's no known cure for Crohn's disease, therapies can greatly reduce its signs and symptoms and even bring about long-term remission and healing of inflammation. With treatment, many people with Crohn's disease are able to function well (CREDITS: Mayo Clinic).   Gastroparesis is a chronic disorder which means delayed stomach emptying without a blockage. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. (CREDITS: Am. College of Gastroenterology)