Genetic disorder involving connective tissue
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91 episodes with Marfan syndrome
34 episodes with Marfan syndrome
10 episodes with Marfan syndrome
2 episodes with Marfan syndrome
2 episodes with Marfan syndrome
2 episodes with Marfan syndrome
2 episodes with Marfan syndrome
2 episodes with Marfan syndrome
2 episodes with Marfan syndrome
Get my Gratitude Journal on Amazon! Elevate your morning/evening routine, and elevate your life using my Gratitude Journal! Get yours here: https://www.amazon.com/Gratitude-Journal-Rashi-Stephens-Charlton/dp/B0CWYHDTGPTry Mary Ruth Organics Supplements! Get 15% off your order with my code: MRORASHI at checkout on www.maryruthorganics.com.Welcome back to Catwalk Through Life!Today's episode focuses on Marfan Syndrome. Marfan Syndrome is a genetic disorder that affects connective tissue, the strong fibers that support organs and structures in the body. Since this disorder is not vastly known or talked about I wanted to bring more awareness to it. In this episode, I'm joined by Cassie Bartolomey - a hardworking mother of 3, a go-getter, wife, boss lady, and a friend who has lived life with Marfan Syndrome. Today's episode includes talking points like having gratitude even when times get hard, having confidence in who you are no matter what labels are put on you, and what mindset shifts you can adopt to elevate your life. Resources: https://www.mayoclinic.org/diseases-conditions/marfan-syndrome/symptoms-causes/syc-20350782 "What is Marfan Syndrome: Marfan syndrome is an inherited disorder that affects connective tissue — the fibers that support and anchor your organs and other structures in your body. Marfan syndrome most commonly affects the heart, eyes, blood vessels and skeleton.People with Marfan syndrome are usually tall and thin with unusually long arms, legs, fingers and toes. The damage caused by Marfan syndrome can be mild or severe. If your aorta — the large blood vessel that carries blood from your heart to the rest of your body — is affected, the condition can become life-threatening.Treatment usually includes medications to keep your blood pressure low to reduce the strain on your aorta. Regular monitoring to check for damage progression is vital. Many people with Marfan syndrome eventually require preventive surgery to repair the aorta."Other links we discussed: Enneagram Personality Test: https://www.truity.com/test/enneagram-personality-test?ppcga=fixed&gad_source=1&gad_campaignid=15425445081&gbraid=0AAAAADvsRqlnKUq9opNwSjTONBz-kjrKg&gclid=CjwKCAjwruXBBhArEiwACBRtHS1NFCFfQd147q0kQBHEBqXsyfZ2oHA34gzHpYLNpe4oPgMhu-YA3hoCo7MQAvD_BwEColor Personality Test: https://my-personality-test.com/true-colours***Let me help you conquer your mornings! Download my FREE Morning Routine Checklist! >> https://catwalkthroughlife.com/2023/06/20/free-30-min-morning-routine-checklistThank you all for listening to Catwalk Through Life! I hope you enjoy this episode!*****Helpful Links:Cassie Bartolomey Instagram Page: https://www.instagram.com/cassie.marie.b/?hl=enCatwalk Through Life Instagram Page: https://www.instagram.com/catwalkthroughlife Rashi Stephens-Charlton Instagram Page: https://www.instagram.com/rashistephens Gratitude Journal on Amazon: https://www.amazon.com/Gratitude-Journal-Rashi-Stephens-Charlton/dp/B0CWYHDTGPCatwalk Through Life Facebook Group: https://www.facebook.com/groups/726602181696067Catwalk Through Life Blog: https://www.catwalkthroughlife.com *****Disclaimer: Please know that any advice given is just a suggestion and what my guest has experienced in her own life. This is not medical advice for anyone in particular. We are not medical professionals. Please consult your doctor for medical questions and use your best judgement on what's best for you. The intent behind this episode is to merely share information and try to help anyone we can! :)
This week on The Beat, CTSNet Editor-in-Chief Joel Dunning speaks with cofounders Courtney Maxey-Jones and Connor Wasilnak about their charity, Global Outreach for Medical Equity and Development (GOMED), which exists to deliver essential medical supplies to underresourced regions. Chapters 00:00 Intro 01:33 Surgical Instrument Donations 02:43 Adverse Outcomes in Surgery 10:05 Lymph Node NSCLC Study 12:45 Pleural Invasion by AI Analysis 15:54 Robotic vs Conventional MVR 18:55 Postop Atrioventricular Block 22:36 Extra-Anatomical Bypass & AVR 24:25 Redo MV w Different Strategies 27:57 Manage Aorto-Mitral Abscess Endocarditis 30:41 GOMED Interview 43:04 Closing They discuss the reasons behind its creation, its mission, the current status of the organization, and how individuals and companies can get involved. Additionally, they explored some of the equipment GOMED has and what it needs, and the various locations it serves. Joel also shares insights about a recent patient of his with Marfan Syndrome and pectus excavatum, emphasizing the ongoing importance of the N=1 trial in clinical research. Joel also highlights recent JANS articles on lymph node sampling and survival in non-small cell lung cancer, pleural invasion of peripheral cT1 lung cancer by deep learning analysis of thoracoscopic images, clinical outcomes and costs of robotic-assisted vs conventional mitral valve repair, and postoperative atrioventricular block after surgery for congenital heart disease. In addition, Joel explores extra-anatomical aortic bypass and aortic valve replacement in a patient with aortic coarctation and severe aortic insufficiency, totally endoscopic redo mitral valve surgery with different myocardial protection strategies, and managing aorto-mitral abscess endocarditis after previous AVR with an LVOT enlargement procedure. Before closing, he highlights upcoming events in CT surgery. JANS Items Mentioned 1.) Lymph Node Sampling and Survival in Non-Small Cell Lung Cancer: A 10-Year Danish Cohort Study 2.) Pleural Invasion of Peripheral cT1 Lung Cancer by Deep Learning Analysis of Thoracoscopic Images: A Retrospective Pilot Study 3.) Clinical Outcomes and Costs of Robotic-Assisted vs Conventional Mitral Valve Repair: A National Analysis 4.) Postoperative Atrioventricular Block After Surgery for Congenital Heart Disease: Incidence, Recovery and Risks CTSNET Content Mentioned 1.) Extra-Anatomical Aortic Bypass and Aortic Valve Replacement in a Patient With Aortic Coarctation and Severe Aortic Insufficiency 2.) Totally Endoscopic Redo Mitral Valve Surgery With Different Myocardial Protection Strategies 3.) Managing Aorto-Mitral Abscess Endocarditis After Previous AVR With an LVOT Enlargement Procedure Other Items Mentioned 1.) Global Outreach for Medical Equity and Development 2.) Endoscopic Cardiac Surgery Series: The Swiss Army Knife Approach 3.) Aortic Valve Replacement Series 4.) Career Center 5.) CTSNet Events Calendar Disclaimer The information and views presented on CTSNet.org represent the views of the authors and contributors of the material and not of CTSNet. Please review our full disclaimer page here.
He's a Born Entertainer Matty Cardarploe is someone we have been wanting to get on the show for some time now. He's always at the center of some cool and nerdy project like Stranger Things, Free Guy, A Series of Unfortunate Events: Lemony Snicket's, and much more! However, you will also find that Matty is a stand-up comedian; I politely stole and reused one of his lines with him in the show. He's an author and game creator, in addition to the acting jobs he's had over the years. Matty also discusses his fight with Marfan Syndrome and how his health and his heart are doing now. Matty has a lot to share, and we jam a lot into 35 minutes. Buckle up. Here we go! For more on Matty Cardarpole, please visit the following - All social media - @mattycardarpole New movies to check out - 1) Saving Bikini Bottom: The Sandy Cheeks Movie 2) Demonetized For more on our show partners - Bones Coffee - http://www.bonescoffee.com/FSFPOPCAST and use code FSFPOPCAST Idea Farm - www.ideafarm.store - use discount code FSF15 Level Up Sabers https://bit.ly/FSFLevelUpSabers Win free loot - sign up here - www.fsfpopcast.com/contact For more on our Show - Join our Patreon: https://patreon.com/fsfpopcast Join our Discord! https://discord.gg/cpry4fCDTq Visit our website: https://www.fsfpopcast.com FSF PopCast on BlueSky, Instagram, and Threads - @fsfpopcast This podcast is powered by Pinecast.
He's a Born Entertainer Matty Cardarploe is someone we have been wanting to get on the show for some time now. He's always at the center of some cool and nerdy project like Stranger Things, Free Guy, A Series of Unfortunate Events: Lemony Snicket's, and much more! However, you will also find that Matty is a stand-up comedian; I politely stole and reused one of his lines with him in the show. He's an author and game creator, in addition to the acting jobs he's had over the years. Matty also discusses his fight with Marfan Syndrome and how his health and his heart are doing now. Matty has a lot to share, and we jam a lot into 35 minutes. Buckle up. Here we go! For more on Matty Cardarpole, please visit the following - All social media - @mattycardarpole New movies to check out - 1) Saving Bikini Bottom: The Sandy Cheeks Movie 2) Demonetized For more on our show partners - Bones Coffee - http://www.bonescoffee.com/FSFPOPCAST and use code FSFPOPCAST Idea Farm - www.ideafarm.store - use discount code FSF15 Level Up Sabers https://bit.ly/FSFLevelUpSabers Win free loot - sign up here - www.fsfpopcast.com/contact For more on our Show - Join our Patreon: https://patreon.com/fsfpopcast Join our Discord! https://discord.gg/cpry4fCDTq Visit our website: https://www.fsfpopcast.com FSF PopCast on BlueSky, Instagram, and Threads - @fsfpopcast This podcast is powered by Pinecast.
In this episode of Tiny Show and Tell Us, we hear from a listener who has Marfan syndrome and dive into the complexities of the disease. Then we talk about pathogens that eat — or infiltrate! — plant DNA.We need your stories — they're what make these bonus episodes possible! Write in to tinymatters@acs.org *or fill out this form* with your favorite science fact or science news story for a chance to be featured.A transcript and references for this episode can be found at acs.org/tinymatters.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
In this episode, we review the high-yield topic Marfan Syndrome from the Orthopedics section at Medbullets.comFollow Medbullets on social media:Facebook: www.facebook.com/medbulletsInstagram: www.instagram.com/medbulletsofficialTwitter: www.twitter.com/medbulletsLinkedin: https://www.linkedin.com/company/medbullets
We talked about hand sizes for quarterbacks, including Joe Burrow. We also talked about Marfan Syndrome, which is characterized by large hands among other characteristics.
With NFL free agency approaching, the show previewed notable available players and speculated on Zach Wilson's future. Stefon Diggs' situation was humorously discussed, with Gio alleging he's being extorted. The conversation shifted to quarterback hand sizes and Marfan Syndrome, prompting a caller to provide medical context. C-Lo's update included Rick Pitino's comments on St. John's successful season and more heavily censored audio from the "All The Smoke" podcast. The hour concluded with a discussion of Gio potentially attending the Final Four if St. John's advances, and the hypothetical scenario of which local team's championship appearance would compel the show to travel.
Hour 1 Luis Gil's season is derailed by a severe lat strain, sidelining the Yankees pitcher for months. Discussions shifted to NFL salaries, with hypothetical figures for Boomer's era, and the Bengals' second consecutive tag of Tee Higgins. Boomer critiqued the Giants' QB-centric optimism, suggesting Aaron Rodgers as a potentially better short-term solution. He then questioned the Jets' playoff and Super Bowl chances, debating if a complete rebuild is necessary. C-Lo provided sports updates, starting with the Rangers' victory, and addressed the use of old audio clips in updates. The hour concluded with Boston radio host Fred Toucher's strong disdain for Pat McAfee. Hour 2 The show revisited the Knicks' history of bad coaches and highlighted a humorous "All The Smoke" podcast segment on the 90s Utah Jazz. The unpredictable nature of NFL draft prospects was discussed, citing Jaxson Dart's rise and Shedeur Sanders' perceived lack of engagement in team interviews, sparking comparisons to Boomer's own draft experience and acknowledging potential biases due to Sanders' lineage. C-Lo's update covered his bike tour fundraising, the Jazz podcast segment featuring Vernon Maxwell's admiration for John Stockton, and Rich Eisen's analysis of the Giants' Matthew Stafford pursuit. Sean McVay's vocal coaching style was noted, and the Rangers' consecutive shutouts were recapped. Finally, the show speculated on the Jets' GM's potential missteps and the Raiders' quarterback decision with Tom Brady involved. Hour 3 With NFL free agency approaching, the show previewed notable available players and speculated on Zach Wilson's future. Stefon Diggs' situation was humorously discussed, with Gio alleging he's being extorted. The conversation shifted to quarterback hand sizes and Marfan Syndrome, prompting a caller to provide medical context. C-Lo's update included Rick Pitino's comments on St. John's successful season and more heavily censored audio from the "All The Smoke" podcast. The hour concluded with a discussion of Gio potentially attending the Final Four if St. John's advances, and the hypothetical scenario of which local team's championship appearance would compel the show to travel. Hour 4 Gio believes there's a smear campaign against Shedeur Sanders, but isn't worried about his attitude. Davante Adams will be traded or cut by the Jets. Boomer thinks no quarterbacks in the draft will be difference makers. Jordan Travis' agent blames the Jets for his injury, and Travis removed the Jets from his social media. The Rangers won 4-0 against the Islanders. The Moment of the Day was an intern greeting a stressed engineer. Egg prices have risen due to bird flu, which can spread through goose poop.
Marfan Syndrome is a genetic disorder that affects the body's connective tissue, which holds all the body's cells, organs, and tissue together. It can impact many different parts of the body, including the heart, eyes, blood vessels, and skeleton. Zoe Louise was born with it and she documents her life living with the condition to spread awareness. She graciously agreed to an interview .Note: I had brain and Zoom glitches and had to refill some of the questions so “some of these things are not like the others”
We meet Kay Henderson, a 47-year-old woman from NSW who will end her life today through voluntary assisted dying. For more, head to news.com.auSee omnystudio.com/listener for privacy information.
Join Katie as she talks with Taylor Guglielmo, Chief Growth Officer, Chemistry as they discuss the power one person has to make an incredible impact. From leading with purpose, to creating a culture where employees can live their best lives, to raising awareness around Marfan Syndrome to finding power in tragedy with her work as … Continue reading "Taylor Guglielmo, Chief Growth Officer, Chemistry"
He was odd from a very young age, seemingly brought up by a Grandfather and a carer as the parents were far too busy.He became a voyeur at home, fuelled by his love of graphic films and comics.When they no longer meet his needs, he turns to killing. ...This week we discuss: Murder, Motive, Marfan Syndrome, Radioulnar SynostosisSources:https://books.google.com/books?id=aJPZBQAAQBAJ&pg=PA94&lpg=PA94&dq=Miyazaki+terrorized+Tokyo&source=bl&ots=SsyIKGXu1T&sig=ACfU3U2PNH_kEQdLvextur1Ndq3lJ-_kaQ&hl=en&sa=X&ved=2ahUKEwi3n4HB2IvyAhXCg-AKHTPpDJ04ChDoATAJegQICBAD#v=onepage&q=Miyazaki%20terrorized%20Tokyo&f=falsehttps://www.amazon.com/Best-New-True-Crime-Stories/dp/1642500720/ref=mp_s_a_1_1?crid=27FK4PY8CFRQ3&keywords=the+best+new+true+crime+stories&qid=1658743357&sprefix=the+best+new+%2Caps%2C196&sr=8-1http://murderpedia.org/male.M/m/miyazaki-tsutomu.htmhttps://forensicfield.blog/japanese-serial-killer-tsutomu-miyazaki/https://anomalien.com/japanese-serial-killer-miyazaki-tsutomu-known-as-the-otaku-killer/http://www.crimelibrary.org/blog/2013/01/05/serial-killer-spotlight-tsutomu-miyazaki-otaku-killer/index.htmlhttps://www.buggedspace.com/tsutomu-miyazaki-human-dracula/https://en.wikipedia.org/wiki/Tsutomu_Miyazakihttps://articlebio.com/tsutomu-miyazakihttps://japaninformer.com/tsutomu-miyazaki-the-otaku-killer/ Case Autopsy Sources:https://www.bbc.com/news/world-asia-55313161https://www.cnn.com/2021/09/25/asia/japan-black-widow-killer-intl-hnk-dst/index.htmlSupport the showPatreon https://www.patreon.com/MMoMEmail: murdermeonmondaypodcast@gmail.com Twitter: https://twitter.com/MMonMonday Instagram: https://www.instagram.com/murdermeonmondaypodcast/ Theme Tune is published under license from: Tribe of Noise – Awkward Mystery https://prosearch.tribeofnoise.com/artists/show/29267/32277
In this episode of The Mutation Station, we explore the fascinating world of hypermobility and Marfan syndrome. Hypermobility, commonly known as being double-jointed, allows individuals to extend their joints beyond the typical range of motion, while Marfan syndrome is a genetic disorder affecting connective tissue. We dive into the medical characteristics of Marfan syndrome, including cardiovascular complications, joint flexibility, and the tall, slender build typical of those with the condition. The episode also examines historical figures, such as Abraham Lincoln, who may have had Marfan syndrome, and the portrayal of this disorder in art, including El Greco's elongated figures. We also explore cultural perceptions, myths, and legends that may have been inspired by traits of hypermobility. With references to literature, art, and famous individuals, this episode highlights the impact of genetic mutations on society and history. Tune in to discover the hidden connections between genetics, culture, and creativity.
In today's episode, we have the honor of hosting a truly remarkable guest, Dr. Amanda Lynn Hoffman. As the first Naturopathic physician with Marfan syndrome to specialize in this field, Dr. Amanda Lynn offers invaluable insights for both individuals living with Marfan's Syndrome and their caregivers. Her groundbreaking work in Naturopathic medicine and her personal journey with Marfan's make her an extraordinary source of wisdom and inspiration. In this episode, we dive deep into the world of Marfan's Syndrome, exploring key questions such as: 1. **The Life of a Person Living with Marfan Syndrome** - Discover what daily life looks like for those affected by this condition. 2. **Biological Drivers of Marfan's** - Understand the genetic and biological underpinnings of the syndrome. 3. **General Symptoms and Findings** - Learn about the common signs and symptoms that characterize Marfan's. 4. **Cardiovascular Sequelae of Marfan's** - Explore the cardiovascular complications associated with the disorder. 5. **Surgical Interventions** - Gain insights into how surgery is performed and its role in managing Marfan's. 6. **The Journey of a Marfan's Patient** - Follow the emotional and physical journey of patients living with Marfan's. 7. **Natural Approaches to Supporting Marfan's Patients** - Discover holistic and naturopathic methods to support those with Marfan's. 8. **Addressing TGF-Beta Dysregulation** - Examine how this critical pathway is implicated in Marfan's and ways to address it. 9. **Quality of Life Issues** - Identify the unique challenges faced by Marfan's patients and strategies for improving their quality of life. This episode holds special significance as it was recorded just before Dr. Amanda Lynn underwent her David-5 heart surgery. We discuss her thoughts and experiences leading up to this major procedure, and I'm thrilled to share that she is now on the road to recovery.. About Dr. Amanda Lynn Hoffman Licensed for 13 years as a massage therapist and herbalist Dr. Amanda Lynn has a unique view of the body. She brings in the physical, emotional with the physiological. Dr. Hoffman has expanded her studies across the United States; focusing on Clinical Sports Medicine and Master's work in Expressive Arts Therapy in Cambridge, MA., Spa treatments in Lake Tahoe, Energy-Spiritual work in Hawaii, and Herbal apprenticeships in Eugene, OR. before ever signing up for Med school. Dr. Amanda's treatments are mind, body and spiritually holistic. As a Family Medicine Physician her work has gone to a new level of finding the cause and correcting the body's blocks to allow and support the body's ability to heal itself. Special training and education has taken her interests in the endocrine system specifically, thyroid, adrenals and hormones to become one of her expertise areas. Marfan's syndrome and “loose connective tissue/joints” is her original focus being published for her Naturopathic focus on increasing the integrity of the musculoskeletal and cardiovascular/pulmonary systems. Born and raised in rural Oregon, Dr. Amanda Lynn cares about the wellness of her community and is excited to bring Naturopathic medicine to a larger stage. Dr. Amanda Lynn's thesis was on the Naturopathic treatments for connective tissue health and integrity from the musculoskeletal system to the cardiovascular system, specifically the heart. As a patient herself with a rare genetic disorder Dr. Amanda Lynn is the first Naturopath with Marfan's syndrome to focus on healing pain and strengthening the cardiovascular/muscular system. Special Links: Download "Loose Women_ is a support guide for all things “not talked” about natural therapies for Marfan Syndrome, Vascular Ehlers Danlos, Ehlers Danlos Syndrome, and Hypermobility Spectrum Disorders. Donation when we hit 300 listens in the first 30 days or [commongroundscollective.com]) Honoring the fire victims of Maui 2023. Social Links: https://www.onethingpod.com/guests/amandalynn-hoffman/ --- Support this podcast: https://podcasters.spotify.com/pod/show/onethingpod/support
Send us a Text Message.Discover the remarkable resilience of Rachael Gott, our extraordinary guest born with hypoplastic left heart syndrome (HLHS). Despite her condition remaining uncorrected, Rachel has navigated a complex medical journey, including ten cardiac ablations and two device implants, all while avoiding open-heart surgeries. Rachael also faces Marfan syndrome, which adds another layer of complexity to her life. Join us as Rachael shares her inspiring story, highlighting her ability to overcome innumerable challenges and offering hope to others with congenital heart disease (CHD).Rachael's journey is one of incredible strength and persistence. She opens up about her experiences with multiple heart rhythm issues and the difficulties posed by various medications. As she discusses her forthcoming plans for an open-heart Maze procedure and potential heart and kidney transplants at the Cleveland Clinic, Rachael provides us with a unique glimpse into the emotional and physical toll of living with severe heart conditions. Her late diagnosis in her twenties brings a poignant perspective on the emotional reactions of her parents and how they coped with the news, underscoring the importance of a robust support system.From a seemingly normal childhood filled with sports, singing, and dancing, to the shocking discovery of her condition following severe chest pain, Rachael's story is a testament to the human spirit's endurance. The medical community's awe at Rachael's case highlights the rarity and complexity of congenital heart defects like HLHS. Rachael's experience underscores the importance of community support and the strength she's found in connecting with others facing similar challenges. Tune in to hear her express gratitude for these connections and learn how her journey may soon be shared in a book about resilience.Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
Ever wonder what might be happening when someone passes out in a restaurant? Join hosts Anna Zarov and Olivia Horrigan as they unpack another eventful episode in this week's Myth vs Medicine: Debunking Grey's Anatomy podcast show. In this episode, we will cover:Marfan Syndrome and its complicationsPorcelain Gallbladder and Gallbladder cancerThe reasoning behind prophylactic surgery How personal and professional lives influence one anotherGrab your favorite snack, beverage, or listening buddy and press play! It's a beautiful day to learn what is myth… and what is medicine.Sources: https://greysanatomy.fandom.com/wiki/Let_It_Behttps://www.uptodate.com/contents/porcelain-gallbladder#:~:text=Patients with a porcelain gallbladder,risk appears to be smallhttps://www.uptodate.com/contents/management-of-marfan-syndrome-and-related-disorders#H29https://www.uptodate.com/contents/genetics-clinical-features-and-diagnosis-of-marfan-syndrome-and-related-disorders?search=marfansyndrome&source=search_result&selectedTitle=1~150&usage_type=default&display_rank=1https://www.ncbi.nlm.nih.gov/books/NBK441963/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2464744/#:~:text=The cardiovascular manifestation with aortic,premature death of these patients.https://pubmed.ncbi.nlm.nih.gov/22133496/#:~:text=Event rate (death%2Faortic dissection) was 0.17%25%2Fy.https://www.ncbi.nlm.nih.gov/books/NBK518979/#:~:text=Introduction-,Porcelain gallbladder refers to the condition in which the inner,cholecystitis%2C and cholecystopathia chronica calcarea.https://screenrant.com/how-greys-anatomy-was-originally-different/Mentioned in this episode:Join our email list: mythvsmedpod.comJoin our email list!Join our email list: mythvsmedpod.comJoin our email list!We hope you enjoyed the show! Don't forget to leave us a review on your favorite streaming platform and check out the rest of our links at: linktr.ee/mythvsmedpodOur Link Tree!We hope you enjoyed the show! Don't forget to leave us a review on your favorite streaming platform and check out the rest of our links at: linktr.ee/mythvsmedpodOur Link Tree!Ask us anything about the medicine in Grey's Anatomy here: https://mythvsmedpod.com/ask-questionsAsk us a question!This podcast uses the following third-party
Marfan syndrome is a genetic disorder that makes renders the body's connective tissues incredibly fragile; this can weaken the heart, leading to potentially fatal aneurysms. What's more, anyone with the condition has a 50/50 chance of passing it on to their children.Dr Anne Child is a clinical geneticist who's dedicated her professional life to finding answers and solutions for people affected by Marfan's. Born in Canada, she met her British future-husband while working in Montreal in a case she describes as "love at first sight" - and in the 1970s she relocated her life to the UK.There, an encounter with a Marfan patient she was unable to help set Anne on a career path for life. She subsequently established the team that discovered the gene responsible for Marfan's, and founded the Marfan Trust to drive further research. Since then, life expectancy for those with the condition has jumped from 32 years old, to over 70. Speaking to Professor Jim Al-Khalili, Anne shares how she and her team achieved this remarkable turnaround.Presented by Jim Al-Khalili Produced by Lucy Taylor
Welcome back, every Bendy Body! In this special episode, I wrap up season four and share exciting plans for season five. Join me as I reflect on our journey, from focusing on high-risk populations like dancers and gymnasts to diving deep into medical topics. Listen in for gratitude-filled shoutouts from our wonderful listeners as I read their heartwarming reviews! See you soon for Season 5!Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
Welcome back, every Bendy Body! In this special episode, I wrap up season four and share exciting plans for season five. Join me as I reflect on our journey, from focusing on high-risk populations like dancers and gymnasts to diving deep into medical topics. Listen in for gratitude-filled shoutouts from our wonderful listeners as I read their heartwarming reviews! See you soon for Season 5!Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
In this conversation, Dr. Linda Bluestein interviews Ashok Gupta about his experience breaking the vicious cycle of chronic illness when he had ME-CFS. They discuss the impact of chronic conditions, the brain's priority of survival, and the vicious cycle of symptoms. Ashok explains the Gupta Program, which aims to make patients aware of subtle danger signals in the brain and retrain the brain's response. They also explore the concept of neuroimmune conditioned syndromes and address common myths about brain retraining. With a focus on hypermobility, they discuss the time commitment required to see results, different ways to engage with the program, the importance of somatic retraining and its impact on brain structures, and how clinicians can recommend brain retraining to their patients without sounding like gaslighting. They also explore the duration of the program, potential worsening during the program, and the accessibility and cost of the program. The conversation ends with a discussion on the power of neuroplasticity and a hypermobility hack to make friends with your body.TakeawaysChronic conditions often accompany joint hypermobility and can have a significant impact on individuals and the global economy.Brain retraining involves making patients aware of subtle danger signals in the brain and retraining the brain's response.The brain's priority is survival, which can lead to maladaptive responses and chronic illness.The Gupta program has shown promising results in improving symptoms and overall health in various conditions. Brain retraining requires a time commitment of at least 20 to 30 minutes a day, along with short exercises throughout the day.An independent audit looked at 16 different conditions for three months. They found improvement of 84% with Long COVID, 116% with Lyme disease, 67% with mold illness, and 85% with chemical sensitivitiesClinicians can recommend brain retraining by emphasizing that it is not in the mind but in the brain, and that the brain is triggering the immune and nervous systems.The program is a minimum six-month commitment, but some people may continue for longer to maintain their progress and manage stress levels.Some individuals may experience temporary worsening during the program, but with support and a balanced approach, positive results can be achieved.Healing and recovery are possible, and the brain's neuroplasticity allows for rewiring and improvement in various chronic conditions.Making friends with your body and accepting hypermobility as an attribute can shift your perspective and contribute to healing.The Gupta Program offers a free 28-day trial and a one-year money-back guarantee, making it accessible and low-risk for individuals seeking relief from chronic illnesses.Chapters ➡00:00 Introduction and Background01:43 The Impact of Chronic Conditions04:05 Understanding Brain Retraining05:21 The Brain's Priority: Survival09:40 The Vicious Cycle of Symptoms12:46 The Gupta Program16:28 Neuroimmune Conditioned Syndromes30:33 Time commitment for results33:07 Somatic retraining and brain structures34:23 Recommending brain retraining to patients36:06 Addressing the software issues37:58 Effectiveness of medications with brain retraining39:08 Duration of the program41:50 Potential worsening during the program43:15 Final thoughts and hope for healing45:28 Neuroplasticity and changing the brain51:22 Hypermobility hack: Make friends with your body52:30 Where to find more information about the program58:18 Duration and cost of the program59:25 Accessibility and money-back guaranteeConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
In this conversation, Dr. Linda Bluestein interviews Ashok Gupta about his experience breaking the vicious cycle of chronic illness when he had ME-CFS. They discuss the impact of chronic conditions, the brain's priority of survival, and the vicious cycle of symptoms. Ashok explains the Gupta Program, which aims to make patients aware of subtle danger signals in the brain and retrain the brain's response. They also explore the concept of neuroimmune conditioned syndromes and address common myths about brain retraining. With a focus on hypermobility, they discuss the time commitment required to see results, different ways to engage with the program, the importance of somatic retraining and its impact on brain structures, and how clinicians can recommend brain retraining to their patients without sounding like gaslighting. They also explore the duration of the program, potential worsening during the program, and the accessibility and cost of the program. The conversation ends with a discussion on the power of neuroplasticity and a hypermobility hack to make friends with your body.TakeawaysChronic conditions often accompany joint hypermobility and can have a significant impact on individuals and the global economy.Brain retraining involves making patients aware of subtle danger signals in the brain and retraining the brain's response.The brain's priority is survival, which can lead to maladaptive responses and chronic illness.The Gupta program has shown promising results in improving symptoms and overall health in various conditions. Brain retraining requires a time commitment of at least 20 to 30 minutes a day, along with short exercises throughout the day.An independent audit looked at 16 different conditions for three months. They found improvement of 84% with Long COVID, 116% with Lyme disease, 67% with mold illness, and 85% with chemical sensitivitiesClinicians can recommend brain retraining by emphasizing that it is not in the mind but in the brain, and that the brain is triggering the immune and nervous systems.The program is a minimum six-month commitment, but some people may continue for longer to maintain their progress and manage stress levels.Some individuals may experience temporary worsening during the program, but with support and a balanced approach, positive results can be achieved.Healing and recovery are possible, and the brain's neuroplasticity allows for rewiring and improvement in various chronic conditions.Making friends with your body and accepting hypermobility as an attribute can shift your perspective and contribute to healing.The Gupta Program offers a free 28-day trial and a one-year money-back guarantee, making it accessible and low-risk for individuals seeking relief from chronic illnesses.Chapters ➡00:00 Introduction and Background01:43 The Impact of Chronic Conditions04:05 Understanding Brain Retraining05:21 The Brain's Priority: Survival09:40 The Vicious Cycle of Symptoms12:46 The Gupta Program16:28 Neuroimmune Conditioned Syndromes30:33 Time commitment for results33:07 Somatic retraining and brain structures34:23 Recommending brain retraining to patients36:06 Addressing the software issues37:58 Effectiveness of medications with brain retraining39:08 Duration of the program41:50 Potential worsening during the program43:15 Final thoughts and hope for healing45:28 Neuroplasticity and changing the brain51:22 Hypermobility hack: Make friends with your body52:30 Where to find more information about the program58:18 Duration and cost of the program59:25 Accessibility and money-back guaranteeConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
Dr. Linda Bluestein celebrates 100 episodes of Bendy Bodies discussing the most rewarding part of hosting the podcast and the challenges of podcasting. She emphasizes the importance of balancing the complexity of EDS and the need for healthcare professionals to understand and empathize with the struggles of patients with hypermobility conditions. Dr. Bluestein discusses the symptom burden experienced by individuals with EDS and the challenges they face in getting their symptoms understood and validated by healthcare professionals. She shares her approach to treatment as well as the top three concerns among EDS patients. Dr. Linda Bluestein and guest host Kate Colbert discuss the importance of effective communication between doctors and patients, and the need for healthcare professionals to understand the patient's perspective. Dr. Bluestein shares her goals for the Bendy Bodies podcast and they end with a hypermobility hack for traveling with EDS.TakeawaysHealthcare professionals should strive to understand and empathize with the struggles of patients with hypermobility conditions and recognize their heroic efforts in managing their symptoms. Offering the correct dose of hope is difficult, as it is important to be responsible and not oversimplify the complexities of hypermobility conditions.Individuals with EDS often experience a high symptom burden, including pain, fatigue, and gastrointestinal symptoms.Getting symptoms understood and validated by healthcare professionals can be challenging for EDS patients.Empathy and understanding from both patients and doctors are crucial in managing EDS symptoms.Treatment approaches for EDS are discussed. Effective communication between doctors and patients is essential for better care. Patients can learn how to communicate better and doctors can understand how patients think.The Bendy Bodies podcast aims to improve care for people with symptomatic joint hypermobility, educate healthcare professionals, and support nonprofit organizations.Patients, caregivers, advocates, and medical professionals can contribute to the EDS community by representing it well, sharing their stories, and spreading awareness about the podcast.Chapters ➡00:00 Introduction and Celebration of 100 Episodes25:52 Understanding and Empathizing with Patients' Struggles36:40 The Top Three Concerns Among EDS Patients41:20 The Most Effective Treatment Approaches for EDS44:23 The Role of Mast Cell Activation Syndrome (MCAS)52:12 How an EDS Doctor can Facilitate a Patient's Healthcare Team01:03:16 The Future and Goals of the Bendy Bodies Podcast: Improving Care and Spreading Awareness1:05:21 Improving Quality of Care for Everyone01:14:05 Hypermobility Hack: Packing Heavy and Lightening the Burden on Your BodyConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
Dr. Linda Bluestein celebrates 100 episodes of Bendy Bodies discussing the most rewarding part of hosting the podcast and the challenges of podcasting. She emphasizes the importance of balancing the complexity of EDS and the need for healthcare professionals to understand and empathize with the struggles of patients with hypermobility conditions. Dr. Bluestein discusses the symptom burden experienced by individuals with EDS and the challenges they face in getting their symptoms understood and validated by healthcare professionals. She shares her approach to treatment as well as the top three concerns among EDS patients. Dr. Linda Bluestein and guest host Kate Colbert discuss the importance of effective communication between doctors and patients, and the need for healthcare professionals to understand the patient's perspective. Dr. Bluestein shares her goals for the Bendy Bodies podcast and they end with a hypermobility hack for traveling with EDS.TakeawaysHealthcare professionals should strive to understand and empathize with the struggles of patients with hypermobility conditions and recognize their heroic efforts in managing their symptoms. Offering the correct dose of hope is difficult, as it is important to be responsible and not oversimplify the complexities of hypermobility conditions.Individuals with EDS often experience a high symptom burden, including pain, fatigue, and gastrointestinal symptoms.Getting symptoms understood and validated by healthcare professionals can be challenging for EDS patients.Empathy and understanding from both patients and doctors are crucial in managing EDS symptoms.Treatment approaches for EDS are discussed. Effective communication between doctors and patients is essential for better care. Patients can learn how to communicate better and doctors can understand how patients think.The Bendy Bodies podcast aims to improve care for people with symptomatic joint hypermobility, educate healthcare professionals, and support nonprofit organizations.Patients, caregivers, advocates, and medical professionals can contribute to the EDS community by representing it well, sharing their stories, and spreading awareness about the podcast.Chapters ➡00:00 Introduction and Celebration of 100 Episodes25:52 Understanding and Empathizing with Patients' Struggles36:40 The Top Three Concerns Among EDS Patients41:20 The Most Effective Treatment Approaches for EDS44:23 The Role of Mast Cell Activation Syndrome (MCAS)52:12 How an EDS Doctor can Facilitate a Patient's Healthcare Team01:03:16 The Future and Goals of the Bendy Bodies Podcast: Improving Care and Spreading Awareness1:05:21 Improving Quality of Care for Everyone01:14:05 Hypermobility Hack: Packing Heavy and Lightening the Burden on Your BodyConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
Amy Rae sits down with us again to discuss their experience as a birth worker with Marfan Syndrome and helping disabled clients through pregnancy. ------------------------------------------------------------------- Contact Kelsey at kelseycooper@disabledbirthstories.com to inquire about being interviewed. Instagram: disabledbirthstoriespod Facebook: Disabled Birth Stories Podcast TikTok: @disabledbirthpod
Summer Dashe, a former news anchor and advocate for the chronically ill, shares her POTS and EDS journey. She covers how she manages her symptoms in everyday life and the challenges of getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome). #dysautonomia #ChronicIllness #POTSAwareness TakeawaysGetting a POTS diagnosis can be challenging, and it often takes multiple visits to different doctors before receiving a proper diagnosis.Awareness about POTS among doctors has improved over the years, but there is still a need for more education and understanding.Finding supportive coworkers and a job that accommodates your symptoms is crucial for managing a chronic illness in the workplace.Open and honest communication is key when asking for accommodations, and providing informed reasoning behind the request can help employers understand the need.Remote work has opened up opportunities for individuals with chronic illnesses, allowing them to work in a way that suits their symptoms and abilities.Managing the unpredictability of POTS requires self-compassion and finding strategies that work for you, even if it may not always feel graceful. Know your limits and make decisions based on your boundaries to remain reliable in work and personal life.Accepting a lifelong condition can be challenging, but it allows for a more realistic approach to treatment.Genetic research and advancements in technology provide hope for future awareness, treatment, and potentially a cure.It's important to be honest and transparent about the realities of chronic illnesses to better prepare patients for their journey. Technology played a crucial role in Summer's car accident, with her Apple Watch automatically calling 911 and alerting her emergency contacts.The support and care from family, friends, and coworkers were instrumental in helping Summer through the aftermath of the accident.Summer's experience highlights the importance of valuing oneself and advocating for accommodations in the workplace and she shares her favorite hypermobility hack. Chapters ➡00:00 Introduction and Background08:01 Supportive Coworkers and Accommodations16:01 Benefits of Remote Work32:09 The Impact of Ehlers-Danlos Syndrome on Treatment Approach42:25 Hope for the Future: Advances in Awareness, Treatment, and Cure49:39 The Role of Technology in a Car Accident56:11 The Support System: Family, Friends, and Coworkers01:06:31 Valuing Oneself and Advocating in the WorkplaceConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
Summer Dashe, a former news anchor and advocate for the chronically ill, shares her POTS and EDS journey. She covers how she manages her symptoms in everyday life and the challenges of getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome). #dysautonomia #ChronicIllness #POTSAwareness TakeawaysGetting a POTS diagnosis can be challenging, and it often takes multiple visits to different doctors before receiving a proper diagnosis.Awareness about POTS among doctors has improved over the years, but there is still a need for more education and understanding.Finding supportive coworkers and a job that accommodates your symptoms is crucial for managing a chronic illness in the workplace.Open and honest communication is key when asking for accommodations, and providing informed reasoning behind the request can help employers understand the need.Remote work has opened up opportunities for individuals with chronic illnesses, allowing them to work in a way that suits their symptoms and abilities.Managing the unpredictability of POTS requires self-compassion and finding strategies that work for you, even if it may not always feel graceful. Know your limits and make decisions based on your boundaries to remain reliable in work and personal life.Accepting a lifelong condition can be challenging, but it allows for a more realistic approach to treatment.Genetic research and advancements in technology provide hope for future awareness, treatment, and potentially a cure.It's important to be honest and transparent about the realities of chronic illnesses to better prepare patients for their journey. Technology played a crucial role in Summer's car accident, with her Apple Watch automatically calling 911 and alerting her emergency contacts.The support and care from family, friends, and coworkers were instrumental in helping Summer through the aftermath of the accident.Summer's experience highlights the importance of valuing oneself and advocating for accommodations in the workplace and she shares her favorite hypermobility hack. Chapters ➡00:00 Introduction and Background08:01 Supportive Coworkers and Accommodations16:01 Benefits of Remote Work32:09 The Impact of Ehlers-Danlos Syndrome on Treatment Approach42:25 Hope for the Future: Advances in Awareness, Treatment, and Cure49:39 The Role of Technology in a Car Accident56:11 The Support System: Family, Friends, and Coworkers01:06:31 Valuing Oneself and Advocating in the WorkplaceConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them..
SummaryDr. Tania Dempsey discusses mast cell activation syndrome (MCAS) with a focus on environmental triggers of mast cell disease. TakeawaysInfections can trigger mast cell reactions and people with MCAS may react differently than those without.Identifying and addressing environmental triggers, such as mold and plastics, is important in managing MCAS. Immunotherapy for allergies and asthma may impact MCAS symptoms. Treatment options like Xolair (Omalizumab), ketotifen, cromolyn, and low dose naltrexone (LDN) are discussed. Nutrition, particularly protein intake, supports overall health and affects MCAS symptoms.Fish can be a good source of protein, but it is important to be aware of mercury levels and choose smaller fish.Testing mercury levels can help identify potential toxicity and guide treatment.Antihistamines can be beneficial for managing MCAS symptoms and should not be feared.Individuals with MCAS may have sensitivities to scents, environmental triggers, and EMFs.Finding healthcare providers who understand and can effectively treat MCAS is crucial.Chapters ➡00:00 Introduction to MCAS and Dr. Tanya Dempsey02:28 Infections and MCAS14:31 Immune Deficiency and Infections28:37 Environmental Triggers37:00 Air Purification and Food Quality42:01 Quality of Meat vs. Pesticide-Free Vegetables43:11 Fish as an Alternative to Meat44:32 Toxins in Fish and Mercury Levels46:02 Detoxing Mercury and Sushi Concerns47:08 Reactions to Sushi and Scombroid Food Poisoning48:43 Sensitivity to Scents and Environmental Triggers49:30 Long-Term Antihistamine Use and Dementia52:21 Reactions to Laundry and Facial Products56:23 Treatment Options after Failing Xolair57:12 Food Dyes and MCAS58:18 EMFs and MCAS59:22 Why Some Doctors Fail to Believe in MCAS01:03:41 Immunotherapy for Allergies and MCAS01:04:56 Managing Heat, Sun, and Exercise Triggers01:09:54 Diagnosing MCAS and Lab Testing Challenges01:11:20 Final Thoughts and Finding AnswersConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
SummaryDr. Tania Dempsey discusses mast cell activation syndrome (MCAS) with a focus on environmental triggers of mast cell disease. TakeawaysInfections can trigger mast cell reactions and people with MCAS may react differently than those without.Identifying and addressing environmental triggers, such as mold and plastics, is important in managing MCAS. Immunotherapy for allergies and asthma may impact MCAS symptoms. Treatment options like Xolair (Omalizumab), ketotifen, cromolyn, and low dose naltrexone (LDN) are discussed. Nutrition, particularly protein intake, supports overall health and affects MCAS symptoms.Fish can be a good source of protein, but it is important to be aware of mercury levels and choose smaller fish.Testing mercury levels can help identify potential toxicity and guide treatment.Antihistamines can be beneficial for managing MCAS symptoms and should not be feared.Individuals with MCAS may have sensitivities to scents, environmental triggers, and EMFs.Finding healthcare providers who understand and can effectively treat MCAS is crucial.Chapters ➡00:00 Introduction to MCAS and Dr. Tanya Dempsey02:28 Infections and MCAS14:31 Immune Deficiency and Infections28:37 Environmental Triggers37:00 Air Purification and Food Quality42:01 Quality of Meat vs. Pesticide-Free Vegetables43:11 Fish as an Alternative to Meat44:32 Toxins in Fish and Mercury Levels46:02 Detoxing Mercury and Sushi Concerns47:08 Reactions to Sushi and Scombroid Food Poisoning48:43 Sensitivity to Scents and Environmental Triggers49:30 Long-Term Antihistamine Use and Dementia52:21 Reactions to Laundry and Facial Products56:23 Treatment Options after Failing Xolair57:12 Food Dyes and MCAS58:18 EMFs and MCAS59:22 Why Some Doctors Fail to Believe in MCAS01:03:41 Immunotherapy for Allergies and MCAS01:04:56 Managing Heat, Sun, and Exercise Triggers01:09:54 Diagnosing MCAS and Lab Testing Challenges01:11:20 Final Thoughts and Finding AnswersConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
In this special “EDS Awareness Month” episode of the Bendy Bodies Podcast, founder Dr. Linda Bluestein and guest host Kate Colbert discuss how everyone can learn to spot the signs ofEhlers-Danlos Syndromes.Dr. Bluestein emphasizes the importance of EDS awareness, as many people are still not getting the evaluations and care they need. She also debunks several myths about EDS, including the misconception that EDS does not cause pain and that only geneticists can diagnose it. She emphasizes the importance of early intervention and appropriate treatment for better patient outcomes. They cover the importance of understanding Mast Cell Activation Syndrome (MCAS), the challenges faced by individuals with EDS in their relationships, and how to communicate with romantic partners and family members. Colbert and Dr. Bluestein also discuss the impact of EDS in the workplace and provide tips for employers and coworkers to support individuals with EDS. The conversation emphasizes the need for awareness, empathy, and support for individuals with EDS and other poorly recognized conditions.TakeawaysEDS Awareness Month is an opportunity to educate and spread awareness about Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and associated conditions.Healthcare professionals should listen to their patients and believe them, even if a clear diagnosis is not yet established.Teachers, daycare providers, and nannies can play a crucial role in identifying hypermobility conditions in children. Coaches and athletic instructors should be aware of the signs of EDS in athletes and dancers and provide resources for further evaluation and support.Several myths about EDS, such as the misconception that EDS does not cause pain and that only geneticists can diagnose it, should be debunked.Early intervention and appropriate treatment are crucial for better patient outcomes. Mast Cell Activation Syndrome (MCAS) is an important condition to consider in individuals with environmental sensitivities, even if their tryptase levels are not elevated.Understanding and empathy are crucial in relationships where a partner has EDS or HSD, as the condition can cause dynamic disability and varying needs.Communication is key in relationships, and using mirroring techniques and talking boundaries can help improve understanding and compassion.Employers and coworkers should show support and offer accommodations to individuals with EDS, such as checking in with them, providing grace, and making the workplace more accessible.Increasing awareness about EDS and related conditions is essential to foster empathy, support, and better partnerships in healthcare, workplaces, and society.Chapters ➡00:00 Introduction and EDS Awareness Month09:30 Identifying Hypermobility Conditions in Children31:06 Early Intervention and Appropriate Treatment42:04 Supporting Individuals with EDS in the Workplace54:59 The Importance of Awareness and Empathy for EDS and Related ConditionsConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
We hear Amy Rae's story of pregnancy and parenting with Marfan Syndrome ------------------------------------------------------------------- Contact Kelsey at kelseycooper@disabledbirthstories.com to inquire about being interviewed. Instagram: disabledbirthstoriespod Facebook: Disabled Birth Stories Podcast TikTok: @disabledbirthpod
In this episode, Dr. Chelsea Pierotti discusses coping with dance injuries and transitions, both from a physical and psychological perspective. She explains that the way dancers appraise their injuries and their emotional response to them can greatly impact their coping mechanisms. Dr. Pierotti emphasizes the importance of shifting the mindset from seeing an injury as a disaster to viewing it as a challenge that can be overcome. She also highlights the role of social support in the recovery process and the need for dancers to define success in ways that are within their control. Additionally, Dr. Pierotti addresses the challenges dancers face when transitioning between different forms of dance or when they have to give up dancing altogether. When transitioning out of dance, it is important to consider your values and what truly matters to you in life. This will help guide your future goals and decisions. It is also helpful to reflect on who you admire and what you admire about them, as this can highlight your own values. Grief and loss are common when leaving a dance career, and it is important to acknowledge and process these emotions. The dance world can be more supportive by adopting a positive coaching approach and focusing on the whole athlete, not just their performance. Developing mental skills and self-awareness is crucial for dancers and can be beneficial for everyone.TakeawaysThe way dancers appraise their injuries and their emotional response to them can greatly impact their coping mechanisms.Shifting the mindset from seeing an injury as a disaster to viewing it as a challenge can help dancers overcome the emotional and psychological challenges of injury.Social support plays a crucial role in the recovery process for dancers.Dancers should define success in ways that are within their control, rather than relying solely on external validation.Transitions between different forms of dance or giving up dancing altogether can be challenging, and it's important for dancers to have a strong sense of identity beyond being a dancer. Consider your values and what truly matters to you in life when transitioning out of dance.Reflect on who you admire and what you admire about them to identify your own values.Acknowledge and process the grief and loss that comes with leaving a dance career.The dance world can be more supportive by adopting a positive coaching approach and focusing on the whole athlete.Developing mental skills and self-awareness is crucial for dancers and beneficial for everyone.Chapters ➡00:00 Introduction00:54 Introducing Dr. Chelsea Pierotti01:13 Coping with Injuries03:38 Coping Mechanisms06:34 The Influence of Childhood Experiences08:29 Developing Resilience09:48 Transitioning from Dance12:11 The Role of Pain13:09 Challenges Faced by Hypermobile Dancers13:23 Supporting Dancers through Challenges17:49 The Importance of Social Support18:43 Grief and Loss of a Dance Career20:34 Developing Resilience and Coping Strategies24:57 The Importance of Values27:52 Shifting the Dance Culture29:25 Coping with Career Shifts33:22 Positive Coaching Approach35:55 Developing Mental Skills36:51 Applying Mental Skills to Life37:24 The Importance of Self-Awareness in Dance38:25 Mindset: Controlling the ControllablesConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
Dr. Heather Tick, a renowned pain expert, discusses non-drug therapies for pain relief; applying the principles of integrative medicine for comprehensive pain care. She emphasizes the need for education and understanding of pain neuroscience to empower patients. Dr. Tick also highlights the significance of nutrition in reducing chronic pain and inflammation. Additionally, she explores various modalities, such as acupuncture and manual therapies, as effective strategies for pain relief. Dr. Heather Tick discusses the impact of habits on movement and the importance of developing healthy movement practices. She also explores various modalities for pain relief, including heat, cold, Epsom salt baths, and movement therapies like yoga and Tai Chi. Dr. Tick emphasizes the role of mast cells in the stress response and the importance of managing diet to reduce mast cell activation. She discusses the effectiveness of laser therapy, ozone injections, and shockwave therapy for pain management. Dr. Tick also addresses the overprescription of medications and the potential benefits of supplements. She provides insights into the appropriate use of interventional pain management and the risks associated with steroid injections. Finally, she discusses the challenges of determining the expertise of medical professionals and the need for caution when considering regenerative medicine.TakeawaysIntegrative medicine takes a holistic approach to health, focusing on achieving overall well-being rather than just managing symptoms.Pain management should involve a comprehensive care plan that includes movement, education, nutrition, sleep, psychosocial support, modalities, medications, and supplements.Understanding pain neuroscience can help patients reframe their perception of pain and explore non-pharmacological strategies for pain relief.Nutrition plays a crucial role in reducing chronic pain and inflammation, and a whole-food, plant-based diet is recommended.Modalities such as acupuncture and manual therapies can provide effective pain relief and should be considered as part of a comprehensive pain management plan. Developing healthy movement habits is crucial for optimal movement.Heat, cold, Epsom salt baths, and movement therapies like yoga and Tai Chi can provide pain relief.Managing diet and reducing mast cell activation can help alleviate stress response.Laser therapy, ozone injections, and shockwave therapy may be effective for pain management.Caution is needed when considering the use of medications and supplements.Interventional pain management should be approached with strict criteria and careful consideration.Regenerative medicine shows promise but requires further research and careful selection of providers.Chapters ➡00:00 Introduction to Dr. Heather Tick02:05 Understanding Integrative Medicine07:41 Redefining Pain Management10:31 The Importance of Education in Pain Care12:58 The Role of Nutrition in Pain Relief21:53 Exploring Different Modalities for Pain Relief53:56 Impact of Habits on Movement55:11 Benefits of Tai Chi56:34 Connective Tissue and Movement57:37 Role of Mast Cells in Stress Response58:10 Effectiveness of Laser Therapy01:00:35 Usefulness of Ozone Injections01:02:03 Effectiveness of Shockwave Therapy01:03:13 Overprescribed and Underutilized Medications01:03:44 Importance of Stopping Medications01:04:32 Impact of Proton Pump Inhibitors01:05:37 Role of Gut in Producing Neurotransmitters01:06:34 Importance of B Vitamins and Coenzyme Q1001:17:26 Evaluation of Interventional Pain Management01:19:16 Risks of Steroid Injections01:21:26 Appropriate Use of Regenerative Medicine01:25:30 Determining the Expertise of Medical Professionals01:31:28 Differentiating Flares from New Problems01:33:48 Challenges of IV Infusions and Regenerative MedicineConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
In this Bendy Bodies with the Hypermobility MD podcast, Susan Chalela, MPT discusses support and bracing for hypermobile joints. She shares how her personal and professional experience with joint hypermobility led her to develop the Finding Functional Foundations approach which is being taught as part of The Ehlers-Danlos Society EDS ECHO program. She emphasizes the importance of proper alignment and biomechanics in everyday activities and explains why traditional physical therapy approaches may not be effective for hypermobile patients. Susan also discusses the role of bracing and supports in providing stability and controlling motion. She explains the benefits of using different types of braces for the feet, ankles, pelvis, and neck, and emphasizes the need for proper sizing and education for both patients and physical therapists. Susan also shares her experience with durable medical equipment (DME) and provides recommendations for clinicians interested in offering bracing services. She concludes by highlighting the resources available for further education and support in the field of hypermobility. Watching this episode on YouTube is recommended since there are some graphics used. TakeawaysProper alignment and biomechanics are crucial for protecting joints and managing symptoms in hypermobile individuals.Traditional physical therapy approaches may not be effective for hypermobile patients and can even worsen symptoms.The Finding Functional Foundations approach focuses on teaching patients proper alignment and functional movement patterns.Bracing and supports can provide stability and control motion in hypermobile joints. Proper support and bracing can help manage symptoms and improve function in patients with hypermobility.Different types of braces are available for the feet, ankles, pelvis, and neck, and proper sizing is crucial for optimal support.Education and guidance are essential for both patients and physical therapists to ensure the correct use of braces and maximize their benefits.Clinicians interested in offering bracing services should consider the specific needs of their patients, stock commonly used sizes, and collaborate with DME suppliers.Chapters ➡00:00 Introduction01:22 Background and Interest in Hypermobility11:56 Neurological Interest and Stroke Recovery16:23 Traditional Physical Therapy Approaches25:24 Importance of Bracing and Supports39:18 Feet and Ankle Support40:28 Pelvis Support43:32 Neck Braces51:46 Dispensing DME and Bracing56:56 Carrying Products in the Clinic01:02:59 Final Thoughts and ResourcesConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
This episode centers around unveiling 'Taming the Zebra', a book co-authored by physical therapists, Dr. Patty Stott and Heather Purdin. The book aims to fill a void in understanding and provide therapists with the knowledge to effectively work with patients with hypermobility spectrum disorders (HSD) and Ehlers-Danlos Syndromes (EDS). It covers the impact of connective tissue disorders on various body systems and provides practical tips for modifying physical therapy approaches. The book emphasizes the importance of addressing primary issues and understanding the complexity of each individual's presentation. The chapters cover topics such as modifying movement for gentle exercise, addressing deconditioning and weakness, building confidence and safe strengthening programs, finding physical therapists open to working with EDS patients, expanding the toolkit for physical therapy, and more. TakeawaysThe book 'Taming the Zebra' fills a void in understanding and provides physical therapists with the knowledge to effectively work with patients with HSD and EDS.The book emphasizes the importance of addressing primary issues and understanding the individualized nature of each patient's presentation.A collaborative approach between therapists and patients is essential in managing overlapping problems and setbacks. Modifying movement can allow individuals with HSD and EDS to engage in gentle exercise and maintain movement despite physical limitations.Deconditioning and weakness are common issues for individuals with HSD and EDS, and addressing these problems requires a comprehensive approach that considers the underlying causes and individual goals.Physical therapists should approach treatment with intention, focusing on building confidence and creating safe strengthening programs tailored to the individual's needs.Expanding the toolkit of physical therapy techniques, such as neural rehabilitation and manual therapies, can improve outcomes for individuals with HSD and EDS.Chapters ➡00:00 Introduction and Background01:58 Motivation for Writing the Book03:28 Challenges in Managing EDS and HSD06:08 Different Types of Hypermobility and Connective Tissue Disorders07:35 Approaching Physical Therapy for EDS and HSD09:21 Primary Treatment Approach and Identifying Key Issues21:04 Approaching Physical Therapy with Overlapping Problems22:48 Non-Linear Path of Physical Therapy31:01 Modifying Movement for Gentle Exercise31:21 Addressing Deconditioning and Weakness35:13 Neural Rehabilitation and Muscle Firing36:09 Steps to Successful Strengthening40:18 Expanding the Toolkit for Physical Therapy43:13 Approaching Stabilization and Alignment56:32 Hypermobility HacksConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!
Knowledge is power.So how can we ensure our healthcare system is empowering patients?This episode is a brilliant chat with ‘e-Patient Dave' deBronkart, a legendary advocate of participatory medicine who came into the spotlight during a battle with cancer in 2007.Dave is the living embodiment of participatory medicine, and reflects passionately on numerous inspiring examples of patient-led change: Long Covid, Parkinson's Disease, Marfan Syndrome… the list goes on.Sharing candidly on his own health battle and the preventable death of his mother due to staff shortages at a care home, it's clear Dave has always been dedicated to giving as much to life as he can. Our healthcare system is broken, the establishment is stubborn to change, but patient power will never let up - we can always take matters into our own hands!Follow me on Instagram and Facebook @ericfethkemd and checkout my website at www.EricFethkeMD.com. My brand new book, The Privilege of Caring, is out now on Amazon! https://www.amazon.com/dp/B0CP6H6QN4
How does one successfully launch a boutique dental practice in a saturated market like New York City? In this episode, we speak to, Dr. Arti Jagirdar, who shares her journey of establishing Flatiron Dental, a distinguished dental practice that offers more than just the basics. She offers a candid account of her decision to adopt a patient-centric, fee-for-service model and its subsequent impact on the practice. Dr. Jagirdar's unique offerings such as sleep apnea treatments and airway consultations have been key in differentiating Flatiron Dental in the bustling cityscape of New York.We also delve deeper into the nitty-gritty of setting up shop, from navigating lengthy lease negotiations to the vital role of legal consultations in contract signings. Dr. Jagirdar also recounts the unexpected challenge of a trademark battle over her practice's name, underlining the importance of resilience, legal advice, and the power of standing by your choices with integrity. Rounding up the conversation, we discuss the critical role of cultivating relationships and harnessing the power of word-of-mouth in attracting new patients to your practice, and how becoming a thought leader in the dental community can build a strong brand presence.What You'll Learn in This Episode:The importance of a unique service offering in a densely saturated marketInsights into the fee-for-service model in dentistryWhy never to sign a contract without a lawyer's approvalHow to handle unexpected challenge such as trademark disputesThe power of word-of-mouth and relationships in building a patient baseThe potential for thought leadership to strengthen your brandDon't miss this episode full of valuable insights from Dr. Jagirdar - it's brimming with lessons for anyone wanting to make their mark in a competitive market!Guest: Dr. Arti JagirdarPractice Name: Flatiron DentalCheck out Arti's Media:Website: https://www.flatirondentalnyc.com/Instagram: https://www.instagram.com/flatirondental/Flatiron Dental Playlist: https://open.spotify.com/playlist/5qHLpjIikJHlEOVv3Y7dYY?si=5d09cbd507704653Other Mentions and Links:Podcasts:438: DR. AVI PATEL | CLEAR ALIGNER ADVISORBooks:Man's Search for MeaningThe Denial of DeathThe Artist's Way: 30th Anniversary EditionSoftware:Open DentalBusinesses/Brands:Henry ScheinWonderist AgencyHDA Accounting FirmMethod - Unified SmilesTend Offices in NYCIdeal PracticesBreakaway SeminarsInvisalignQueensboro Plaza Dental CareLocations/Establishments:NYUFordham LawMount KilimanjaroKois CenterBanks/Financial Institutions:First Citizens BankBank of America Wells FargoHuntington BankProvideOrganizations:HIPAAOSHASpear EducationPeople/Connections:Robert MontgomeryDr. Michael NguyenDr. Frank SpearDr. Alina Lane - all smiles DentistryAlan Withall - Henry ScheinDr. Scott LeuneJayme Amos - Ideal PracticesElizabeth Mulderig - Ideal PracticesReed Wrisley - Practice Real Estate GroupPatrick Black - Precision Contracting CorpJaclyn Ionin - Intellectual Property AttorneyMike Gharib - Ideal PracticesChrystle Cu - CocoflossOther:Maslow's Hierarchy of NeedsMarfan SyndromeHost: Michael AriasWebsite: The Dental Marketer Join my newsletter: https://thedentalmarketer.lpages.co/newsletter/Join this podcast's Facebook Group: The Dental Marketer SocietyPlease don't forget to share with us on Instagram when you are listening to the podcast AND if you are really wanting to show us love, then please leave a 5 star review on iTunes! [Click here to leave a review on iTunes]p.s. Some links are affiliate links, which means that if you choose to make a purchase, I will earn a commission. This commission comes at no additional cost to you. Please understand that we have experience with these products/ company, and I recommend them because they are helpful and useful, not because of the small commissions we make if you decide to buy something. Please do not spend any money unless you feel you need them or that they will help you with your goals.
In this Bendy Bodies podcast episode, Dr. Lillian Holm discusses effective physical therapy for EDS and HSD and the importance of correcting function to achieve pain relief and tolerance for exercise. She explains why physical therapy may not always lead to the expected outcome, emphasizing the need for specialized therapists and individualized treatment. She addresses common misconceptions about physical therapy and highlights the importance of communication and realistic expectations. Dr. Linda Bluestein and Dr. Holm cover topics such as progress and setbacks, balancing stretching with strengthening, starting to walk again after severe limitations, physical therapy for scoliosis, and helpful resources and information. Dr. Holm also shares her favorite hypermobility hacks to help individuals stay motivated and achieve their goals.TakeawaysPhysical therapy can be highly beneficial for symptomatic joint hypermobility, providing pain relief and improving function.Finding a specialized physical therapist with expertise in hypermobility conditions is crucial for successful treatment.Misconceptions about physical therapy, such as the belief that it should be painful, can hinder progress.Individualized treatment plans and gradual progression are key to achieving the best outcomes in physical therapy.Open communication with the physical therapist and realistic expectations are essential for success.Chapters ➡00:00 Introduction to Dr. Lillian Holm01:15 What can physical therapy do for people with symptomatic joint hypermobility?04:19 Reasons why physical therapy may not lead to expected outcomes09:09 How to find the best possible physical therapist for EDS and HSD11:58 Misconceptions about physical therapy for joint hypermobility21:25 Approach for people who don't like to exercise25:41 Resetting the boom and bust cycle35:23 Metrics for measuring success in physical therapy50:18 Progress and Setbacks52:47 Balancing Stretching with Strengthening56:22 Starting to Walk Again58:12 Physical Therapy for Scoliosis01:01:04 Resources and Information01:02:23 Hypermobility HacksConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!
This one is special, maybe one of the best episodes to date. Isaiah Austin joins us with one of the most unique journeys we've heard. His "race" is unlike any other players, he may not be playing in the league, but he's in the league. We learn about his love for hoop, the Baylor days, and how the game he loved got taken away in a moments notice. Lock in! Go to http://prizepicks.com/race and use code "race" for first deposit match up to $100 Make Sure to Follow: https://www.instagram.com/_kingcozy/ https://www.instagram.com/tpinsonn/ https://www.youtube.com/c/TidalLeague
In this episode, Dr. Linda Bluestein and Corinne McLees discuss hand problems in EDS including pain, weakness, and injuries. This conversation covers various topics related to hand problems, including ring splints, hand exercises, avoiding strain and hyperextension, tips for traveling, challenges of the medical system for chronic pain, hand pain with writing, hand pain and numbness in sleep, thumb pain and De Quervain's tendonitis, cubital tunnel syndrome, TFCC tear, trigger finger and so much more. TakeawaysHand pain, weakness, and injuries are common in individuals with joint hypermobility.Hand pain in connective tissue disorders can be caused by hypermobility, subluxations, nerve impingement, and arthritis.TheraPutty is a useful tool for strengthening hands. Low profile hand support options include kinesio tape, silicone thumb supports, and the Push MetaGrip.Traditional therapies may not work for hand pain in hypermobility if the underlying hypermobility is not addressed.Ring splints can provide support and stability for hypermobile joints in the hands.Insurance coverage for ring splints may vary, and Silver Ring Splints is a US-based provider that offers insurance coverage options. Trigger finger occurs when the tissue surrounding a tendon becomes knotted, causing the tendon to catch and lock when the finger is flexed.Steroid injections combined with splinting can be effective in treating trigger finger, especially in acute cases.Trigger finger may be misdiagnosed in the hypermobile population, as it can be a result of subluxation rather than tissue accumulation.Hypermobility hacks include ergonomic hand movements, swimming, abdominal compression, and prioritizing daily movement.YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Chapters00:00 Introduction and Overview01:38 Difference between Occupational and Physical Therapy04:44 Common Reasons for Hand Pain in Connective Tissue Disorders09:53 Approach to Hypermobility in Hands12:46 Strengthening Hands with TheraPutty20:55 Strengthening Hands without Overdoing It21:27 Reasons Traditional Therapies May Not Work for Hand Pain24:08 Low Profile Hand Support Options28:23 Ring Splints and Insurance Coverage38:34 Ring Splints and Plastic Splints40:33 Hand Exercises for Different Age Groups42:33 Avoiding Strain and Hyperextension45:21 Tips for Traveling with Hand Problems47:51 Challenges of the Medical System for Chronic Pain51:22 Hand Pain with Writing53:52 Hand Pain and Numbness in Sleep56:16 Thumb Pain and De Quervain's Tendonitis59:17 Cubital Tunnel Syndrome01:02:19 Torn Triangular Fibrocartilage Complex (TFCC)01:06:14 Decuervain's Tendonitis01:09:17 TFCC Tear01:13:32 Trigger Finger01:17:31 Differentiating Trigger Finger from Subluxation01:18:38 Pulley Injuries in Rock Climbers01:19:25 Hypermobility Misdiagnosis01:20:46 Hypermobility HacksConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!
In this episode, Dr. Linda Bluestein interviews Dr. Ilene Ruhoy about causes of brain fog, as well as its relationship to various conditions such as mast cell activation syndrome, craniocervical instability, dysautonomia, and CSF leaks. She explains how these conditions contribute to cognitive dysfunction and the importance of identifying underlying causes. Dr. Ruhoy emphasizes the need for a comprehensive evaluation and individualized treatment approach for patients experiencing brain fog. They delve into the role of nutrition in cognitive function, emphasizing the impact of food choices on inflammation. They highlight the importance of avoiding processed foods and sugar, increasing vegetable consumption, and improving lifestyle factors. Dr. Ruhoy shares surprising findings on the MRI of mast cell activation syndrome (MCAS) patients. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.TakeawaysBrain fog is characterized by cognitive difficulties such as slow thinking, difficulty learning and recalling information, and trouble focusing and paying attention.Conditions such as mast cell activation syndrome (MCAS), craniocervical instability (CCI), dysautonomia, Ehlers-Danlos Syndromes, and CSF leaks can contribute to cognitive dysfunction and brain fog.Intracranial hypertension (high pressure), hypotension (low pressure), and Tarlov cysts can also contribute to brain fog. Identifying the underlying causes of brain fog is crucial for developing an effective treatment plan.A comprehensive evaluation, including medical history, imaging studies, and laboratory tests, can help determine the contributing factors and guide treatment decisions. Applying knowledge gained from podcasts and research in clinical practice can help healthcare professionals provide better care to their patients.Making a meaningful difference in patients' lives is a rewarding aspect of being a healthcare professional.Nutrition plays a crucial role in cognitive function, and food choices can either be anti-inflammatory or pro-inflammatory.Avoiding processed foods and sugar, increasing vegetable consumption, and improving lifestyle factors can positively impact cognitive function.Chapters00:00 Introduction of Dr. Ilene Ruhoy01:57 Defining Brain Fog04:14 Risk Factors for Brain Fog09:42 Identifying Contributing Factors11:52 Cognitive Dysfunction and Mast Cell Activation Syndrome14:09 Cognitive Dysfunction and Craniocervical Instability18:18 Cognitive Dysfunction and CSF Leak22:59 Cognitive Dysfunction and Dysautonomia25:25 Cognitive Dysfunction and Upper Cervical Instability30:12 Cognitive Dysfunction and CSF Leak38:11 Applying Knowledge in Clinical Practice39:04 The Importance of Making a Meaningful Difference40:31 The Role of Nutrition in Cognitive Function42:38 The Impact of Food Choices on Inflammation43:44 Avoiding Processed Foods and Sugar44:38 The Role of Complex Carbohydrates and Dairy45:28 Increasing Vegetable Consumption46:44 Improving Lifestyle Factors47:09 Where to Find Dr. Ilene Ruhoy OnlineConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!
In this episode, Dr. Linda Bluestein interviews Dr. Roger Seheult about the importance of sleep for people with chronic illness, chronic pain, and joint hypermobility. Dr Seheult, a quadruple board-certified physician with expertise in sleep medicine, discusses various topics related to sleep, including the circadian rhythm, the impact of light on sleep, the effect of blue light on sleep, ideal bedtime, the impact of electronics on sleep, the role of melatonin, and the timing of eating and its effect on sleep. Other topics include challenges of working from home, sleep schedules and chronic illness, shifting sleep patterns, sleep apnea and its relationship with chronic illness, sleep medications, sleep watches and monitoring devices, sleep positions and joint instability, and the importance of sleep education in medical training. Dr. Seheult provides valuable insights and recommendations for improving sleep quality and managing sleep-related issues.YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Takeaways:Sleep is crucial for people with chronic illness, chronic pain, and joint hypermobility.Understanding the circadian rhythm is important for optimizing sleep.Light, especially blue light, can significantly impact sleep quality.The suprachiasmatic nucleus plays a key role in regulating the sleep-wake cycle.Morning light exposure is important for setting the body's internal clock.The timing of eating can affect sleep quality.Establishing a consistent sleep schedule and avoiding late-night eating can improve sleep quality.Shifting sleep patterns can be challenging, especially for individuals with chronic illness.Sleep apnea is common in individuals with chronic illness and connective tissue disorders like Ehlers-Danlos Syndromes.Home sleep studies can be effective in detecting sleep apnea, but in-lab studies may be necessary for individuals at higher risk of central apnea.Sleep medications should be used cautiously due to potential side effects and dependency issues.Sleep watches and monitoring devices can provide valuable insights into sleep patterns and quality.Proper sleep positions, pillows, and mattresses can help alleviate joint instability and pain during sleep.Education on sleep disorders and their relationship with chronic illness should be improved in medical training.Patient advocacy and sharing information through podcasts can help raise awareness and improve access to sleep education.Chapters00:00 Introduction of Dr. Roger Seheult03:22 Understanding the Circadian Rhythm07:02 Impact of Light on Sleep09:20 The Suprachiasmatic Nucleus and its Role in Sleep09:49 The Importance of Light for People with Chronic Illness13:35 The Effect of Blue Light on Sleep15:28 Ideal Bedtime for Optimal Sleep17:25 The Impact of Electronics on Sleep19:26 The Role of Melatonin in Sleep20:05 The Importance of Morning Light23:29 The Timing of Eating and its Effect on Sleep24:00 Challenges of Working from Home and Small Meals25:20 Sleep Schedule and Chronic Illness28:57 Falling Asleep While Watching TV31:49 Sleep Apnea and Chronic Illness39:05 Sleep Apnea and Temporomandibular Dysfunction44:09 EDS and Central Sleep Apnea44:30 Elevating the Head of the Bed45:23 Alignment Problems and Breathing47:37 Sleep Medications and Side Effects1:00:15 Supplements for Sleep1:02:01 Sleep Watches and Monitoring Devices1:03:01 Sleep Positions and Joint Instability1:04:46 Paresthesias and Numbness in Sleep1:05:11 Pillow Recommendations for Cervical Instability1:07:35 Waking Up in Pain1:09:58 Sympathetic Nervous System Activation1:12:23 Safety of Melatonin1:14:49 Improving Education on EDS and HSDConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!
In this episode, Professor Tiffany Lee is interviewed about service dogs and disability rights and accommodations. They discuss the Americans with Disabilities Act, the definition of disability, and disability benefits. They also explore reasonable accommodations in the workplace and education settings, as well as the challenges and advocacy involved. The conversation covers topics such as disclosing disabilities to employers and universities, getting a service dog, dealing with unresponsive disability lawyers, appealing denied disability benefits, and correcting inaccuracies in medical records. The episode provides valuable insights and guidance for individuals with disabilities navigating legal and practical aspects of their rights and accommodations. Professor Lee wanted to clarify the following points from the discussion of Social Security disability. SSI places limits on assets ($2000 for an individual) and income. SSDI does not have an asset limit but requires the recipient not be able to engage in “substantial gainful activity,” which generally acts as an income limit. There is a “Ticket to Work” program called “Choose Work” available that provides some options similar to those in the earlier “Ticket to Work” program mentioned in this episode.YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Key points discussed: **Americans with Disabilities Act (ADA):** The conversation explores the ADA, a crucial piece of legislation that prohibits discrimination against individuals with disabilities and mandates reasonable accommodations.**Disability Benefits:** The episode delves into disability benefits, including the process of applying, appealing denied benefits, and addressing inaccuracies in medical records.**Workplace and Education Accommodations:** Reasonable accommodations in both workplace and education settings are explored, shedding light on the challenges and advocacy involved.**Disclosure to Employers and Universities:** Professor Tiffany Lee provides insights into the considerations and potential challenges of disclosing disabilities to employers and universities.**Service Dogs:** The episode discusses obtaining a service dog and the associated considerations.**Dealing with Disability Lawyers:** Challenges related to unresponsive disability lawyers are addressed, offering guidance on how to navigate such situations.**Financial Impact of Disability:** The limitations and financial impact of applying for disability, including asset limits and restrictions on work and income, are discussed.**Flaws in the Disability System:** Issues within the disability system, such as the poverty threshold and its impact on marriage, are highlighted.**Emergency Response Accessibility:** Making disaster and emergency response accessible to people with disabilities is discussed.Overall, the episode provides an exploration of the legal, practical, and personal aspects of disability rights and accommodations, offering valuable insights and guidance for individuals with disabilities.Chapters00:00 Introduction and Overview01:14 Americans with Disabilities Act03:28 Reasonable Accommodations in the Workplace04:38 Determining Reasonable Accommodations09:07 Accommodations in High School and College11:22 Challenges with Disability Services in Education13:59 Advocating for Accommodations in Education16:36 Disclosing Disabilities to Employers and Universities19:03 Determining Job Compatibility with Accommodations21:03 Getting a Service Dog23:37 Regulations and Considerations for Service Dog Training36:33 Dealing with Unresponsive Disability Lawyers38:07 Appealing Denied Disability Benefits40:03 Legal Recourse for Undertreatment of Pain43:07 Accommodations for Productivity Standards43:45 Correcting Inaccuracies in Medical Records47:46 Knowing When to Get an Accommodation or Apply for Disability48:36 Considerations for Applying for Disability50:23 Assets and Poverty Threshold for Disability58:58 Making Disaster and Emergency Response Accessible01:02:44 Hypermobility Hack: Walking DeskConnect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!
In this episode, psychologist Josh Spell discusses disordered eating in dance. Josh shares insights into the coping mechanisms behind eating disorders and offers advice for directors, teachers, and friends who suspect someone may be struggling with an eating disorder. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.YOUR guest co-host is Jennifer Milner, former professional ballet and Broadway dancer and founder of Bodies In:Motion. TakeawaysDancers, especially those with hypermobility, are at a higher risk for developing eating disorders due to the pressure to achieve a certain body image and the overlap with other mental health issues.Eating disorders are often coping mechanisms that provide a sense of control or avoidance of difficult emotions and stressors.The dance world's emphasis on perfectionism and sacrifice can contribute to the development of eating disorders.It is important for dance studios and companies to have protocols in place for addressing eating disorders and to provide support and resources for dancers.If you suspect someone may be struggling with an eating disorder, reach out to a trusted adult or professional for guidance and support.Chapters00:00 Introduction and Welcome00:30 Introducing Josh Spell01:36 Prevalence of Eating Disorders in Dancers03:09 The Relationship Between Hypermobility and Eating Disorders05:08 Understanding Eating Disorders as Coping Mechanisms08:00 The Intersection of Eating Disorders and Other Mental Health Issues10:35 The Impact of Social Media and Diet Culture on Eating Disorders13:25 Self-Image and Body Standards in the Dance World16:19 The Influence of Social Media and Zoom on Body Image20:25 Balancing Sacrifice and Suffering in the Dance World23:00 The Role of Dance Studios and Companies in Supporting Dancers' Mental Health27:13 Steps for Directors and Teachers to Take When Suspecting an Eating Disorder32:47 Steps for Friends and Loved Ones to Take When Suspecting an Eating Disorder36:31 Steps to Take If You Suspect You Have an Eating Disorder42:18 Hypermobility Hack: Giving the Eating Disorder a Persona45:12 Where to Find Josh Spell OnlineThis important conversation with Josh Spell about disordered eating in dance will leave you feeling more knowledgeable and better equipped to handle difficult situations. Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!
In this episode, psychologist Dr. Amanda Cassil discusses the unfair EDS journey (Ehlers-Danlos Syndromes) and provides strategies for effectively communicating with healthcare providers. Dr. Cassil provides valuable insights and tools for navigating the healthcare system and improving the quality of life for individuals with chronic illnesses. In this conversation, Dr. Amanda Cassil and Linda Bluestein, MD discuss the challenges faced by patients with hypermobility disorders (like Ehlers-Danlos Syndromes) and chronic illnesses.YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.TakeawaysApproach advocacy from a place of compassion and understandingRegulate your nervous system and slow down to make more intentional and strategic decisionsAcknowledge and process grief as a natural part of living with chronic illnessConsult with trusted individuals and healthcare providers for guidance and support.Collaboration between patients and healthcare providers can be challenging due to the merging of different knowledge and experiences.Patients can advocate for themselves by asking doctors how to prioritize and address multiple symptoms and issues.Dialectical behavioral therapy (DBT) is an effective tool for nervous system and emotional regulation.Patients should remember that their medical journey is often unfair, but there are healthcare providers working to make systemic changes.Chapters00:00 Introduction01:04 Motivation for Giving the Talk at the EDS Society Global Conference04:14 Advocacy and the Challenges of the Healthcare System07:16 Approaching Advocacy without Blame10:27 Grief and Acceptance in Chronic Illness13:34 Key Takeaways from the Talk18:04 The Role of the Prefrontal Cortex in Chronic Illness19:12 Neurodiversity and Advocacy20:12 Presenting Research to Doctors23:02 Dealing with Suboptimal Experiences with Clinicians26:09 Processing Traumatic Experiences29:16 The Role of Grief in Chronic Illness36:09 Coping with Traumatic Experiences40:36 Presenting Research to Doctors (Continued)46:27 Navigating the Challenges of Collaboration48:07 Addressing Multiple Symptoms and Issues53:42 Dialectical Behavioral Therapy (DBT) for Nervous System and Emotional Regulation59:41 Finding Your Way Through an Unfair JourneyThis important conversation with Dr. Amanda Cassil about the unfair EDS journey will leave you feeling better equipped to handle difficult medical encounters. Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!Resources mentioned during the episode:https://www.STEMpsychology.comhttps://www.instagram.com/stempsychology/https://www.linkedin.com/in/drcassilhttps://drgabormate.com/book/the-myth-of-normal/https://www.resmaa.com/merchhttps://www.besselvanderkolk.com/#HealthJourney #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #MedicalGaslighting #BendyBuddy #HypermobilityMD #BendyBodies #HealthAdvocacy #SupportPatients #PatientEmpowerment #HealthcareStruggles #WomenInStem #DisabledInStem
In this Bendy Bodies with the Hypermobility MD podcast episode, making a MCAS documentary is discussed. Distinguished participants in this collaborative effort include Dr. Leonard Weinstock, Dr. Larry Afrin, Dr. Tania Dempsey, Dr. Laurence Kinsella, and Dr. Linda Bluestein, alongside dedicated patient advocate Jill Brook. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Key Highlights:1. The initiative incorporates both a documentary and an online educational library strategically designed to elevate awareness surrounding MCAS, Dysautonomia, and Hypermobility Spectrum Disorders.2. Renowned healthcare professionals, namely Dr. Leonard Weinstock, Dr. Larry Afrin, Dr. Tania Dempsey, Dr. Laurence Kinsella, and Dr. Linda Bluestein, in conjunction with patient advocate Jill Brook, are pivotal contributors to this initiative.3. The documentary aspires to elucidate the myriad challenges confronted by individuals navigating the complexities inherent in the triad of syndromes, emphasizing the imperative of heightened awareness among healthcare providers to facilitate more efficacious treatment modalities.4. Dr. Afrin underscores the prevalence of MCAS and advocates for its consideration in the differential diagnosis for patients with complex medical presentations.5. The term "dystrophism" is introduced within the discourse, signifying aberrations in growth and development propelled by dysfunctional mast cells.6. Participants candidly share their experiences during the documentary's filming process, underscoring the inherent difficulty of condensing intricate information into concise soundbites.7. The timely recognition of MCAS is underscored as a critical determinant for effective treatment interventions and an enhanced quality of life.8. The team is dedicated to elucidating the nuances of MCAS, POTS, and EDS through the medium of a documentary, with the aim of providing comprehensive knowledge about these medical conditions.9. Emphasis is placed on the significance of joint hypermobility. Should it give rise to complications, it may serve as a potential indicator for dysautonomia or MCAS.10. Dysautonomia serves as an encompassing term, inclusive of conditions such as POTS and Inappropriate Sinus Tachycardia. 11. Identifying growing pains (quite literally!) associated with these conditions can be a challenging endeavor. The gradual development poses a considerable challenge for all involved.12. A fervent commitment is made towards establishing an educational repository, replete with in-depth explorations by experts, delving into the intricacies of these subjects.13. The team candidly discloses the necessity for financial support to conclude their documentary project. Their overarching objective is to disseminate awareness about MCAS, POTS, and EDS.14. The documentary, at its core, is designed to render this information easily accessible, ensuring that individuals – be they patients, families, or clinicians – can acquire a comprehensive understanding of coping with these conditions.Chapters00:00 Introduction00:37 Creating Awareness and Increasing Treatment Options03:09 The Birth of the Documentary Project05:20 Filming in New York07:19 Filming in St. Louis10:32 The Motivation to Work with Complex Patients15:49 The Journey of Recognizing MCAS17:34 The Impact of MCAS Treatment21:00 Personal Experiences and Incorporating MCAS Treatment22:42 The Need for an Educational Library25:29 The Challenge of Condensing Information26:21 Describing MCAS in Sound Bites31:10 The Importance of Raising Awareness34:42 Growth and Development Abnormalities in MCAS40:03 Main Points about Hypermobility Syndromes and Dysautonomia44:48 Partnership with LDN Research Trust51:47 Final Words and Call for Support54:26 Recognition and Treatment of Unrecognized Patients55:44 Importance of Learning and Trying56:13 Gratitude for Dedicated Doctors56:47 Closing Remarks and ResourcesConnect with YOUR Bendy Specialist, Linda Bluestein, MD! Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!Products, organizations, and services mentioned in this episode:https://www.mcasfund.org/https://aimcenterpm.com/https://www.gidoctor.net/leonard-weinstock-mdhttps://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-mdhttps://www.hypermobilitymd.com/https://www.standinguptopots.org/#MCAS #film #documentary #HealthJourney #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #POTS #Dysautonomia #BendyBuddy #HypermobilityMD #BendyBodies #UnexplainedHealthIssues #POTSsyndrome #MastCells #PainManagement #PatientAdvocacy
In this episode, join thoracic surgeon and chest wall reconstruction expert Adam Hansen, MD, to learn about slipping rib surgery in EDS. Well known for his innovative surgeries for slipping rib syndrome (SRS), Dr Hansen has treated close to 1000 SRS patients. Many of his patients are challenged with Ehlers-Danlos Syndrome and other skeletal hypermobility disorders. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.TakeawaysSlipping rib syndrome and other chest wall disorders are often related to skeletal hypermobility.Evaluation and diagnosis of chest wall problems require a thorough physical exam and imaging, such as CT scans.Symptoms of chest wall compression syndromes include pain, breathing difficulties, and organ dysfunction.Emerging areas of discovery include posterior joint disorders and bridging cartilage separation.Self-help strategies, such as improving posture and specific exercises, can help manage chest wall problems and potentially avoid surgery. Maintaining good posture and performing exercises that strengthen the back can help alleviate slipping rib syndrome.Taping strategies and lifestyle changes, such as using lumbar pillows and sit-to-stand desks, can provide relief and improve posture.Avoid high velocity manipulation, as it can exacerbate slipping rib syndrome.Candidates for surgery should have a strong core, realistic expectations, and should reduce or eliminate the use of pain medications before the procedure.The Hansen 3.0 technique is the preferred surgical procedure for slipping rib syndrome, offering better outcomes compared to previous techniques.The surgery has a low rate of complications, with the most common being collapsed lungs, hematomas, and wound infections.There is no significant difference in outcomes between patients with hypermobility spectrum disorder and those with Ehlers-Danlos syndrome.The likelihood of recurrence or additional slipped ribs after repair is low when the surgery is performed correctly.Physicians should be aware of slipping rib syndrome and other chest wall problems and stay updated on the latest techniques and treatments. Dr. Adam Hansen teaches other surgeons how to address slipping ribs and complex chest wall reconstruction.He has built a network of surgeons around the world to provide local treatment options for patients.There is a correlation between cervical instability and slipping ribs, and both are part of the broader issue of hypermobility and skeletal disorders.Focusing on key areas for stability, such as the core, can have a significant impact on overall care and muscle strength.Chapters00:00 Introduction and Warm-up01:03 Background and Expertise of Dr. Adam Hansen03:14 Understanding Slipping Rib Syndrome and Other Chest Wall Disorders09:32 Relationship Between Chest Wall Disorders and Skeletal Hypermobility14:01 Evaluation and Diagnosis of Chest Wall Problems21:16 Symptoms and Impact of Chest Wall Compression Syndromes24:49 Emerging Areas of Discovery in Slipping Rib Syndrome28:47 Evaluation of Chest Wall Problems: Physical Exam and Imaging36:37 Abdominal Compression Syndromes and Chest Wall Disorders41:19 Self-Help Strategies and Avoiding Surgery43:48 Posture and Exercise45:09 Taping Strategies and Lifestyle Changes46:23 Avoiding High Velocity Manipulation48:08 Qualifications for Surgery51:18 Preparing for Surgery53:21 Surgical Procedures58:08 The Hansen 3.0 Technique01:01:18 Outcomes and Complications01:20:06 Hypermobility Spectrum Disorder and EDS01:21:09 Male-Female Differences01:22:11 Recurrence and Additional Slipped Ribs01:23:49 Physician Awareness and Education01:24:58 Teaching Other Surgeons01:26:05 Building a Network of Surgeons01:26:50 Correlation Between Cervical Instability and Slipping Ribs01:28:38 Hypermobility and Skeletal Disorders01:29:59 Key Areas for Stability01:30:17 Hypermobility Hacks01:31:00 Finding Dr. Adam Hansen Online01:33:33 Closing RemarksThis important conversation with Dr. Adam Hansen about surgery for slipping rib syndrome and other chest wall problems will leave you feeling more knowledgeable and with a better understanding of the key factors to consider when contemplating surgery for these painful conditions. Connect with YOUR Bendy Specialist, Linda Bluestein, MD! Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!Products, organizations, and services mentioned in this episode:http://www.youtube.com/@adamhansen6524Slipping Rib Syndrome Physical Examination SD 480p:https://www.youtube.com/watch?v=Na69xXUZGhg
It's YOUR time to access information that #BendyBodies need, crave, and deserve. Medical insights, science-based information, inspiring stories, empathy and support, hypermobility hacks, and news you can use. In this episode, YOUR guest is Jill Miller, author of the book 'Body by Breath: The Science and Practice of Physical and Emotional Resilience.' Jill has 30 years of corrective movement expertise that forges links between the worlds of yoga, massage, athletics, and pain management. Her signature self-care fitness programs, Yoga Tune Up® and The Roll Model® are found at gyms, yoga studios, hospitals, athletic training facilities and corporations worldwide. Jill is the former anatomy columnist for Yoga Journal, has been featured in New York Times, Wall Street Journal, Shape, Women's Health, O, the Today Show, and is a contributing expert on the Oprah Winfrey Network. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.TakeawaysJill Miller's book 'Body by Breath' is a comprehensive guide to physical and emotional resilience.Bendy bodies should care about fascia because it is the organizing tissue of the entire body and affects mobility and stability.Self-mobilization and self-myofascial release are important for bendy bodies to address tension and enhance proprioception.The five P's of the parasympathetic nervous system (perspective, place, position, pace of breath, and palpation) can help induce relaxation and enhance body awareness.The low back decompression exercise using therapy balls can provide relief and improve proprioception for bendy bodies. Improving core strength and breathing is essential for hypermobile bodies.Understanding zone one, zone two, and zone three breathing can help manage pain, movement, and emotional states.Self-fascial treatments, such as deep gut and rib massage, can improve breathing and alleviate hypertonicity.Extracorporeal shockwave therapy is a non-invasive treatment that can reduce inflammation and alleviate pain.Community support and engagement are crucial for managing hypermobility.High-intensity interval training can improve aerobic capacity and overall well-being for hypermobile individuals. It is highly recommended to have individual guidance for this.Chapters00:00 Introduction and Background03:01 Inspiration for Writing the Book09:11 Organization of the Book13:30 Why Bendy Bodies Should Care About Fascia15:40 Starting with Limited Budget19:02 Helpful Exercises for Bendy Bodies23:27 Addressing Mixed Picture of Bendiness and Stiffness28:07 The Five P's of the Parasympathetic Nervous System36:14 Low Back Decompression Exercise46:07 Improving Core Strength and Breathing51:41 Understanding Zone One, Zone Two, and Zone Three Breathing57:29 Self-Fascial Treatments for Better Breathing01:00:10 Managing Hypermobility Symptoms01:03:35 Extracorporeal Shockwave Therapy for Acute Pain01:09:10 The Power of Community and High-Intensity Interval TrainingThis important conversation with Jill Miller about using the breath to reduce pain will leave you feeling more knowledgeable and with a better understanding of the contributing factors to suboptimal pain control. Connect with YOUR Bendy Specialist, Linda Bluestein, MD! Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority!Products, organizations, and services mentioned in this episode:www.tuneupfitness.comhttps://thereadystate.com/https://thereadystate.com/product/becoming-a-supple-leopard-2nd-edition/https://fasciaguide.com/experts/carla-stecco/https://jen.health/https://www.tuneupfitness.com/shop/online-course/roll-into-hiithttps://patternpt.com/https://www.youtube.com/@TuneUpFitnesshttps://www.amazon.com/Yoga-Bendy-People-Optimizing-Hypermobility/dp/B0B2TSN3W3/ref
It's YOUR time to access information that #BendyBodies need, crave, and deserve. Medical insights, science-based information, inspiring stories, empathy and support, hypermobility hacks, and news you can use. In this episode, YOUR guest is Colin Halverson, PhD. He received his Ph.D. in linguistic and medical anthropology from the University of Chicago, where he studied communication issues in medical genetics, based on fieldwork at Mayo Clinic. At Chicago, he also completed a fellowship in clinical ethics, and then a postdoctoral fellowship in medical ethics at Vanderbilt. He is currently a professor at Indiana University School of Medicine, where his research focuses on ethical care for patients with rare disease, in particular Ehlers-Danlos Syndrome (EDS).YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Takeaways Patients with Ehlers-Danlos syndrome often face an antagonistic relationship with healthcare professionals, leading to mistrust and negative health outcomes. The diagnostic odyssey experienced by patients with EDS can be likened to a hero's journey, characterized by challenges, misdiagnoses, and a long path to diagnosis. The panoply of symptoms in EDS and the complexity of chronic pain make it difficult for patients to describe their experiences and receive appropriate care. Clinician-associated traumatization is a distinct construct that captures the negative experiences and trauma patients with EDS face in their interactions with healthcare professionals. Building a trustworthy team of clinicians and seeking support from the EDS community can help patients navigate the challenges of their condition and improve their healthcare experiences. Chapters00:00 Introduction00:29 Dr. Halverson's Background and Research Interest03:02 The Hero's Journey of Patients with Ehlers-Danlos Syndrome05:51 Challenges Faced by Patients with Ehlers-Danlos Syndrome07:02 Antagonistic Relationship with Healthcare Professionals08:29 Impact of Antagonistic Relationship on Patients09:47 Triggers for Transition into Unbearable Symptoms12:36 The Panoply of Symptoms in Ehlers-Danlos Syndrome13:44 Importance of Panoply of Symptoms in Diagnosis15:22 Challenges in Describing Multi-Systemic Symptoms16:26 Numeric Pain Scales and the Complexity of Chronic Pain19:40 Research on Hypermobile Ehlers-Danlos Syndrome20:39 Research on Other Forms of Ehlers-Danlos Syndrome23:56 Failure of Empathy in Patient-Provider Relationships27:24 Worse Health Outcomes and Trust Issues28:06 Impact of Failure of Empathy on Patients30:33 Dealing with Antagonistic Relationships31:45 The Isolation and Invisibility of Ehlers-Danlos Syndrome36:12 Clinician-Associated Traumatization and its Differences from Other Constructs39:21 Surprising Aspects of the Research42:01 Recommendations for Patients with Clinician-Associated Traumatization45:01 Future Directions of Research49:04 Closing RemarksThis important conversation with Dr. Halverson about clinician-associated trauma in patients with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) will leave you feeling better prepared to advocate for the care you need. Connect with YOUR Bendy Specialist, Linda Bluestein, MD! Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.Join YOUR Bendy Bodies community at www.BendyBodiesPodcast.com. YOUR bendy body is our highest priority!Products, organizations, articles, and services mentioned in this episode:https://bioethics.iu.edu/people/colin-halverson.htmlhttps://pubmed.ncbi.nlm.nih.gov/34524722/https://doi.org/10.1016/j.ssmqr.2023.100237Dr. Halverson can be reached at chalver@iu.edu.#InvisibleIllness #HealthJourney #PatientAdvocacy #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #BendyBuddy #HypermobilityMD #BendyBodies #EhlersDanlosResearch #MedicalGaslighting #PatientSupport #ResearchOpportunity #DiagnosticJourney
IT'S ANOTHER BRAND NEW GUEST! Liam Nelson teaches us all the (literal) highs and lows of Marfan syndrome: being five feet tall in kindergarten, living in a world not made for you, aggressive masculinity, surgeries, hooking up at Marfan conferences, and meeting Chewbacca.
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