Podcasts about ehlers danlos syndrome

Send Zorba a message!Zorba digs into a new study that shows taking vitamin D during pregnancy can lead to better cognitive health for the child. He also helps a caller with questions about Ehlers-Danlos syndrome. And he answers emails about rosacea, Raynaud's syndrome, and we get some listener-sourced Sven and Ole jokes.Support the showProduction, edit, and music by Karl ChristensonSend your question to Dr. Zorba (he loves to help!):Phone: 608-492-9292 (call anytime)Email: askdoctorzorba@gmail.comWeb: www.doctorzorba.orgStay well!

In this solo intro episode, host Vicki Peterson introduces herself, the show, and the question she's sitting with this season: how do I create again — in a way that actually honors who I am — after spending decades doing it in a way that was slowly taking me apart?Vicki is a screenwriter, educator, late-diagnosed autistic person, and recovering perfectionist living with Ehlers-Danlos Syndrome and its many comorbidities. This episode is her origin story — the Hollywood years, the diagnoses, the collapse, the grief, and the decision to rebuild. Out loud. Imperfectly. On generator power.It's also a note on process: why this show uses scripted monologues alongside interviews, why AI tools are part of the workflow, and why the best this host can do today is enough.MENTIONED IN THIS EPISODE:Lindsey Mackereth — therapist, researcher, and founder of the neurocomplexity framework. The term "neuro complex" comes from her work.Lindsey's Substack: https://lindseymackereth.substack.com/The Ehlers-Danlos Society — for more information on EDS and its comorbidities:EDS Society: https://www.ehlers-danlos.com/Hat on a Hat on a Hat (Substack): https://ahatonahatonahat.substack.com/SUPPORT THE SHOWIf this episode resonated with you, share it with someone who might need it.Hat on a Hat on a Hat (Substack): https://ahatonahatonahat.substack.com/Donations are gratefully accepted and help keep this show going at whatever pace is sustainable.Buy Me a Coffee: https://buymeacoffee.com/vickipeterson✍️Subscribe now to hear future episodes.

Today, I am thrilled to connect with Dr. Linda Bluestein, a board-certified anesthesiologist and integrative pain medicine physician specializing in Ehlers-Danlos Syndrome, hypermobility spectrum disorders, and related conditions, including POTS, mast cell activation, and chronic pain. In our discussion, we discuss the invisible illness problem and complex medical illnesses, and Dr. Bluestein shares how being diagnosed with EDS in her 40s prompted her to pivot her career to focus on what is missing in medicine regarding those complex illnesses. We explore different types of hypermobility conditions and why women are disproportionately more affected by those conditions than men. We clarify what hypermobility means, the cluster of EDS, POTS, and MCAS, what to do when you have unexplained multi-system symptoms, and how AI can be beneficial. We also examine pain science, hypermobility, sympathetic overdrive, kinesiophobia, anesthesia considerations in connective tissue disorders, and the impact of midlife transitions, HRT, medical gaslighting, nervous system regulation, movement, nutrition, and validation and hope for patients with complex medical illnesses. I am delighted to share this informative conversation with Dr. Linda Bluestein with the Everyday Wellness community, and look forward to having Dr. Bluestein back to explore this topic further. IN THIS EPISODE, YOU WILL LEARN: How patients with complex symptoms often go from specialist to specialist, yet none of them connect the dots. How patients tend to be blamed when treatments fail How POTS diagnosis is often based on heart rate changes, even though it's not primarily a heart rate condition How dysautonomia affects multiple body systems How, apart from joint flexibility, hypermobility can also involve skin, tissues, organs, and multiple body systems. How EDS, POTS, and MCAS can overlap The value of AI tools for helping patients organize complex symptom histories How sympathetic overdrive and kinesiophobia can worsen chronic pain The impact of medical gaslighting Bio:  Dr. Linda Bluestein Dr. Linda Bluestein is a board-certified anesthesiologist and integrative pain medicine physician who specializes in Ehlers-Danlos Syndromes, hypermobility spectrum disorders, and related conditions, such as POTS, mast cell activation, and chronic pain. She is the founder of Hypermobility MD and the host of the internationally recognized Bendy Bodies Podcast, where she bridges the gap between patients and clinicians by unpacking complex medicine through a pattern-based, whole-person lens. Dr. Bluestein is also an EDS patient herself, bringing both clinical expertise and lived experience to conversations about diagnostic delays, medical gaslighting, and compassionate, effective care. Connect with Cynthia Thurlow   Follow on X, Instagram & LinkedIn Check out Cynthia's website. Submit your questions to support@cynthiathurlow.com  Join other like-minded women in a supportive, nurturing community: The Midlife Pause/Cynthia Thurlow.  Purchase Cynthia's book, The Menopause Gut. Cynthia's Intermittent Fasting Transformation Book The Midlife Pause Supplement Line Connect with Dr. Linda Bluestein Bendy Bodies Podcast Dysautonomia Support Network

In this heartfelt episode of Off Leash, Molly sits down with service dog trainer, advocate, and disability educator Jaime Simpson to share a story of resilience, purpose, and the life-changing bond between humans and dogs.   Jaime opens up about living with epilepsy, Ehlers-Danlos Syndrome, vision challenges, and other complex medical conditions—and how her service dogs have become essential partners in helping her navigate daily life. From seizure alerts and medication retrieval to mobility support and emotional healing, Jaime's dogs do far more than provide assistance—they've helped save her life. The conversation explores the incredible world of service dog training, the science behind medical alert dogs, and Jaime's mission to help others through her organization, New Life Working Dogs. She also shares how a near-death hospitalization transformed her outlook on life, inspiring her to focus on connection, kindness, and helping others find support through both dogs and community.   This inspiring episode is a reminder of the extraordinary things dogs are capable of, the power of perseverance, and the beauty of finding purpose through service. Thanks so much for listening to Off Leash and be sure to subscribe and review!   Follow Jaime: Instagram & Socials: @EmbracingEcho Website: embraceeveryday.org

Thursday June 11th, 2026: For years, I've dealt with a collection of seemingly random symptoms that never quite made sense when looked at individually. But what if they're all connected?In today's solo episode, I'm sharing the health rabbit hole I've recently found myself down as I explore the possibility that many of my long-standing symptoms could be related to connective tissue issues. I talk about my sister's recent Ehlers-Danlos Syndrome diagnosis, the genetic testing process, and answer some of the questions I've been getting from listeners who are navigating similar concerns.I also share a major mindset shift that's been making a huge difference in my day-to-day life. After realizing I was spending far too much time and energy on things that weren't actually improving my quality of life, I've been re-prioritizing. More food prep, more movement, more things I genuinely enjoy, and a lot less rushing around feeling overwhelmed.And because I can't stop talking about it, I also reveal my latest ChatGPT obsession: using it for home improvement projects. If you've ever wanted to redesign a room, plan a renovation, or visualize changes before spending a dollar, you're going to love this hack.A little health talk, a little life update, and a very enthusiastic discussion about AI-powered home design. Enjoy!See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

It's Thursday, and that means it's time to talk politics with The Times Picayune/New Orleans Advocate's Stephanie Grace. Today, we hear why New Orleans is gaining access to unspent Katrina money from FEMA. We also learn about Mayor Moreno's recent win: bringing the Sewerage and Water Board under more city control. A sports medicine physician has opened one of the world's first clinics and treatment centers specifically for Ehlers-Danlos syndrome at the Fascia Institute. Also known as EDS, Ehlers-Danlos syndrome affects the body's connective tissues, often categorized by loose skin, unstable joints and hypermobility.The doctor at the helm of the new clinic, Dr. Jacques Courseault, tells us more about the condition, why it often goes undiagnosed and how to treat it.The new documentary “GASLIT” explores how communities along the Gulf Coast are impacted by liquified natural gas export terminals. Academy Award winner and activist Jane Fonda travelled throughout Texas and Louisiana, meeting and talking with the various people who have concerns about the expansion of the industry. She met with shrimpers, cattle farm workers, former oil workers and “reluctant activists” to learn how they are banding together to protect the coastlines. The film's director, Katie Camosy, joins us with more.—Today's episode of Louisiana Considered was hosted by Bob Pavlovich. Our managing producer is Alana Schreiber. We get production and technical support from Garrett Pittman, Adam Vos and our assistant producer, Aubry Procell. You can listen to Louisiana Considered Monday through Friday at noon and 7 p.m. It's available on Spotify, Google Play and wherever you get your podcasts. Louisiana Considered wants to hear from you! Please fill out our pitch line to let us know what kinds of story ideas you have for our show. And while you're at it, fill out our listener survey! We want to keep bringing you the kinds of conversations you'd like to listen to.Louisiana Considered is made possible with support from our listeners. Thank you!

Ashleigh Lindemann spent 17 years in pain before anyone could tell her why. Starting at age 15 with what turned out to be endometriosis, she navigated misdiagnoses, eight prescription medications out of Cleveland Clinic, and 17 surgeries, including the hip surgery that finally uncovered the answer hiding in plain sight. Refusing to accept a lifetime on Cymbalta and Neurontin, Ashleigh took the slow, determined road toward natural healing — and eventually found PEMF therapy (Pulsed Electromagnetic Field therapy), a technology she describes as earthing and grounding "on steroids." Now the owner of Pulse for Life LLC in Post Falls, Idaho, Ashleigh uses PEMF, red light therapy, and hyperbaric oxygen to help clients reduce inflammation, accelerate healing, and give their cells the energy God designed them to run on.HealingStrong's mission is to educate, equip and empower our group leaders and group participants through their journey with cancer or other chronic illnesses, and know there is HOPE. We bring this hope through educational materials, webinars, guest speakers, conferences, community small group support and more.Please take advantage of our FREE resources below to help you along your health and healing journey:Support Group DirectoryHolistic Curriculum - Participant GuideSupport Our Mission - DonateAdditional Health ResourcesListen to Previous EpisodesWebsite: healingstrong.org

Teatime with Miss Liz Serves: Monica DuBeau Title You Might Be a Zebra: When Refusing to Give Up Becomes the Diagnosis Tagline Sometimes the hardest battle is being believed. Description On June 5th at 3 PM EST, Teatime with Miss Liz welcomes Monica DuBeau — entrepreneur, former IBM executive, AI compliance leader, author, advocate, and survivor whose extraordinary journey transformed personal crisis into purposeful impact. After spending 25 years building a successful corporate career that included leadership roles at JPMorgan Chase, IBM, and co-founding an AI compliance company, Monica's life took an unexpected turn when mysterious symptoms began disrupting her daily life. Despite years of seeking answers, she was repeatedly dismissed, misdiagnosed, and told her symptoms were stress-related. Refusing to accept uncertainty, Monica applied the same investigative mindset that fueled her professional success. After tracking 111 medical appointments across 26 providers, she ultimately uncovered the truth: she was living with Ehlers-Danlos Syndrome (EDS) and Craniocervical Instability (CCI), a rare condition requiring highly specialized brain and spinal surgery. Now in recovery, Monica is turning her experience into advocacy through her memoir, You Might Be a Zebra, and a growing patient resource platform dedicated to helping others navigate rare disease journeys and find answers sooner. This Teatime is about self-advocacy, perseverance, identity, healing, and life's most unexpected challenges. Opening Teatime with Miss Liz, where we serve real-life T-E-A through stories that educate, inspire, and remind us of the strength that lives within each of us. Today, we welcome someone whose journey is a powerful reminder that sometimes we know our own story better than anyone else. Monica DuBeau spent years searching for answers while facing symptoms that few understood and many dismissed. Yet she never stopped advocating for herself, never stopped asking questions, and never stopped seeking the truth. Her story is one of courage, resilience, determination, and transformation — proving that even in our darkest chapters, purpose can emerge. Monica, welcome to Teatime with Miss Liz. ”Closing Today's conversation reminds us of the importance of listening—to our bodies, our instincts, and our own inner voice. Monica DuBeau's journey shows us that perseverance can uncover answers, that advocacy can create change, and that our greatest struggles can often become our greatest purpose.Through resilience, courage, and unwavering determination, she transformed a deeply challenging experience into a mission to help others feel seen, heard, and believed. As we leave today's Teatime, consider this: What would happen if you trusted your own voice enough to keep searching for answers when others told you to stop? Because sometimes the breakthrough begins when we refuse to give up. Monica DuBeau is a former IBM executive, entrepreneur, AI compliance leader, author, and advocate. After years of searching for answers, she uncovered her own diagnosis of Ehlers-Danlos Syndrome and Craniocervical Instability. Today, she shares her journey through advocacy, writing, and resources designed to help others navigate rare medical conditions. Favourite Colour Pink One Word That Describes Her Zebra Her T-E-E Tracked • Exposed • Authored Tracked the clues others missed Exposed the truth behind years of unanswered symptoms Authored a new chapter of advocacy, awareness, and hope Three Phrases That Share Her Story* Fragile Emotional State* The Cage* The Woman With The Tea Set Feature Topics You Might Be a Zebra Self-Advocacy in Healthcare Rare Disease Awareness Leadership Through Adversity Ehlers-Danlos Syndrome & Craniocervical  Website:https://monicadubeau.com/Book Information:https://monicadubeau.com/booksLinkedIn:https://www.linkedin.com/in/monicadubeau/#teatimewithmissliz#YouMightBeAZebra#RareDiseaseAwareness#PatientAdvocacy#MakingADifferenceOneCupAtATime

What happens when a sharp, inquisitive 14-year-old interviewer starts asking questions most adults never think to ask?In this conversation with Rithvik Raya, Coach Alex dives deep into some of the biggest questions surrounding health, fitness, resilience, agency, suffering, faith, and human potential.Together they explore:Living with Ehlers-Danlos Syndrome and chronic painWhy modern abundance may be making us physically and mentally weakerThe science of adaptation and resilienceWhy "calories in, calories out" oversimplifies human biologyThe surprising science behind hope molecules and exerciseWhy coaching and community outperform diets and algorithmsThe role of agency in personal transformationWhat fitness has to do with faith, purpose, and stewardshipHow modern culture encourages victimhood—and how to reclaim responsibilityWhy intensity isn't always the answerThe difference between starting a fitness journey and becoming the kind of person who finishes itThis is one of the most thoughtful and wide-ranging conversations I've had in a long time. Rithvik asked questions that forced me to think carefully about what I actually believe and why.If you've ever wondered how fitness connects to psychology, theology, resilience, leadership, and the pursuit of a meaningful life, this conversation is for you.Life is hard.The question isn't whether you'll face difficulty.The question is:What kind of hard will you choose?⏱️ Timestamps00:00 – Introduction01:06 – Living With Ehlers-Danlos Syndrome05:15 – Why Modern Comfort May Be Making Us Weak08:42 – Choosing Your Hard10:40 – Childhood Trauma, Science & Finding Truth13:05 – Why Coach Alex Built Faithful Fitness16:45 – The Fitness Industry's Biggest Problem17:05 – Calories In, Calories Out? Not So Fast21:28 – Hope Molecules, Myokines & Exercise Science25:00 – What Is Agency?27:52 – Can Agency Survive the Algorithm Age?29:30 – Why Coaching & Community Beat Every Diet31:57 – The Science Behind SpyFit35:37 – Leadership, Responsibility & Personal Agency38:47 – Is Fitness Really About Intentional Living?40:02 – Is There A Moral Dimension To Fitness?45:32 – Pride, Gluttony, Shame & Stewardship48:21 – The Problem With Victimhood Culture50:38 – Why Intensity Is Overrated53:01 – How the Body Actually Adapts57:31 – Better Daily, Comparison & Following Christ01:01:12 – Social Media, Movement & Human Flourishing01:02:29 – Why People Really Get In Shape01:05:08 – Coaching, Identity & Freedom01:06:46 – Rapid Fire Round01:10:15 – Final Thoughts

In this episode, Mary Greensmith sits down with natural medicine expert and homeopath Josie Semmes. If you or someone you love struggles with chronic fatigue, rapid heart rate, or dizziness upon standing, this is an episode you will not want to miss. Josie shares her incredible journey toward better health and explains how homeopathy offers real hope for those living with POTS. What Exactly is POTS? POTS stands for Postural Orthostatic Tachycardia Syndrome. It happens when your body's signals misfire as you go from lying down to standing up. Instead of your blood vessels constricting normally, your heart rate spikes dramatically. This can cause severe dizziness, extreme fatigue, brain fog, and sometimes fainting. Josie explains that POTS is not a one-size-fits-all condition, and many individuals feel a huge sense of relief when they finally get to share their full symptom picture with a holistic practitioner. The POTS Trifecta During the episode, Josie discusses a fascinating pattern she frequently sees in her clinic known as the "Trifecta." Many people dealing with POTS also experience hypermobile Ehlers-Danlos Syndrome (a connective tissue condition) and Mast Cell Activation Syndrome (MCAS). Because homeopathy addresses the whole person, all of these connected conditions can be supported at the exact same time. Real Progress and Success Stories Josie shares two incredible success stories: The Post-Vaccine Case: A healthcare worker developed severe POTS symptoms after her second COVID vaccine, accompanied by a swollen, numb tongue. By focusing on that unique acute symptom, Josie found a remedy that dropped the client's POTS symptom score from a 50 down to a 2 out of 120! The Teenager with the Trifecta: A teen who developed POTS after having mono was highly reactive to food dyes and chemicals. After taking a well-matched homeopathic remedy (Belladonna), her chronic fatigue lifted, she could eat normally without reacting, and she regained the energy to simply be a teenager again. Nutrition and Conventional Medicine Josie emphasizes that homeopathy can be safely used right alongside your conventional prescriptions. She also highlights the absolute importance of nutrition—sometimes, just ensuring you have enough protein can dramatically shift your fatigue levels, giving your body the vital energy it needs to bounce back. Important links mentioned in this episode: Visit Josie's website: https://www.nexushomeopathy.com/ Know more about Josie: https://homeopathy247.com/professional-homeopaths-team/josie-semmes/ Follow Josie on Instagram: https://www.instagram.com/the.pots.homeopath/ Join her Homeopathy for POTS Facebook Community: https://www.facebook.com/groups/homeopathyforpots   You can also subscribe to our podcast channels available on your favourite podcast listening app below: Apple Podcast: https://podcasts.apple.com/us/podcast/homeopathy247-podcast/id1628767810 Spotify: https://open.spotify.com/show/39rjXAReQ33hGceW1E50dk Follow us on our social media accounts: Facebook: https://www.facebook.com/homeopathy247 Instagram: https://www.instagram.com/homeopathy247 You can also visit our website at https://homeopathy247.com/

Save 20% on all Nuzest Products WORLDWIDE with the code MIKKIPEDIA at www.nuzest.co.nz, www.nuzest.com.au or www.nuzest.comCurranz Supplement: Use code MIKKIPEDIA to get 20% off your first order - go to www.curranz.co.nz  or www.curranz.co.uk to order yours NZ listeners - save 10% off Calocurb by using the code Mikkipedia10 at www.calocurb.co.nzThis week on the podcast, Mikki speaks to Melissa Koehl, a physical therapist and movement specialist living with hypermobile Ehlers-Danlos Syndrome, who brings both clinical expertise and lived experience to the conversation.In this episode, Melissa breaks down what EDS actually is in practical terms, how it shows up day-to-day, and why so many people go years without a diagnosis. The discussion explores the difference between being naturally flexible and having true hypermobility, along with the often-overlooked symptoms like chronic pain, fatigue, and proprioceptive challenges. Melissa explains what's happening beneath the surface with joint stability and connective tissue, and why traditional approaches to exercise can sometimes do more harm than good.The conversation then shifts into what actually works. From strength training and motor control to pacing, recovery, and rebuilding trust in the body, Melissa shares a clear framework for managing hypermobility safely and effectively. They also touch on the role of muscle mass, nutrition, and daily habits in supporting long-term function.It's a grounded and reassuring conversation for anyone navigating a body that feels unpredictable, offering both clarity and practical direction.Melissa is a physical therapist with over two decades of experience, specialising in hypermobility, joint pain, and movement rehabilitation. She lives with hypermobile Ehlers-Danlos Syndrome (hEDS) herself, giving her a unique perspective on both the clinical and lived realities of the condition.Originally a nationally competitive level 10 gymnast, Melissa's flexibility was once a strength but ultimately contributed to a series of injuries, including a career-ending stress fracture in her lower back. Ongoing pain led her to explore different movement modalities, including Pilates, yoga, and strength and conditioning. While each offered benefits, it was the integration of these approaches that proved most effective.Melissa went on to develop the ChimeraFit method, a system that combines elements of Pilates, yoga, strength, and balance training to support people with hypermobility, arthritis, and chronic joint pain. She has been teaching this approach for over 20 years, helping individuals build strength, stability, and confidence in their bodies through safe and effective movement.https://www.instagram.com/dr.melissakoehl.pt/https://www.chimera-health.com/ground-control-september-2026-waitlisthttps://www.chimera-health.com/  Contact Mikki:https://mikkiwilliden.com/https://www.facebook.com/mikkiwillidennutritionhttps://www.instagram.com/mikkiwilliden/https://linktr.ee/mikkiwilliden

Join Elevated GP: www.theelevatedgp.com Register for the live meeting: https://www.theelevatedgp.com/ElevationSummit Download the Injection Molding Guide: https://www.theelevatedgp.com/IMpdf    What happens when a patient's oral symptoms are actually the first warning signs of a much larger systemic health issue? In this episode of Digital Dentist Digest, Dr. Melissa Seibert welcomes Dr. Natalia Trahan, Assistant Professor at the Medical University of South Carolina, for a deep and clinically relevant conversation on the relationship between systemic disease and oral health.   Dr. Trahan specializes in oral medicine, pathology, and radiology, with a strong focus on the intersection of oral and systemic disease. Together, they discuss how conditions like Sjögren's Disease, Rheumatoid Arthritis, Fibromyalgia, Ehlers-Danlos Syndrome, Juvenile Idiopathic Arthritis, and Postural Orthostatic Tachycardia Syndrome can present first in the dental office—often before a formal medical diagnosis is made.   This episode explores practical diagnostic strategies for identifying oral manifestations of autoimmune disease, including xerostomia, hyposalivation, chronic parotitis, recurrent candidiasis, increased caries risk, TMJ degeneration, trismus, hypermobility disorders, and inflammatory arthritis involving the temporomandibular joint. Dr. Trahan explains how she evaluates these patients clinically, what radiographic findings matter most, and when advanced imaging like MRI becomes essential for proper diagnosis and treatment planning.   The conversation also addresses the emotional and clinical complexity of treating patients with chronic pain conditions such as fibromyalgia and connective tissue disorders like Ehlers-Danlos Syndrome. Dr. Trahan shares how empathy, patient advocacy, and a deeper understanding of autoimmune and rheumatic disease can transform the way dentists approach patient care and prevent provider burnout.   For general dentists, restorative dentists, and clinicians interested in oral medicine, this episode offers actionable insight into how better understanding systemic disease leads to better dentistry. If you want to improve diagnosis, strengthen interdisciplinary care, and become a more comprehensive provider, this is an episode you won't want to miss.  

Join Elevated GP: www.theelevatedgp.com Register for the live meeting: https://www.theelevatedgp.com/ElevationSummit Download the Injection Molding Guide: https://www.theelevatedgp.com/IMpdf    How often do systemic diseases first reveal themselves in the dental chair? In this episode of Digital Dentist Digest, Dr. Melissa Seibert sits down with Dr. Natalia Trahan, Assistant Professor at the Medical University of South Carolina, to explore the critical connection between systemic health and oral health.   Dr. Trahan shares her expertise in oral medicine, pathology, and radiology, with a special focus on how conditions like Sjögren's Disease, Rheumatoid Arthritis, Fibromyalgia, Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and autoimmune disorders present with oral symptoms that dentists often encounter first.   The conversation dives into xerostomia, hyposalivation, parotitis, TMJ involvement, chronic pain conditions, inflammatory arthritis, and the importance of recognizing when oral symptoms are actually signs of larger systemic health concerns. Dr. Trahan also explains how dentists can improve diagnosis and treatment planning by looking beyond the oral cavity and considering the full patient picture.   This episode is especially valuable for dentists who want to strengthen their diagnostic skills, improve patient communication, and deliver more compassionate, comprehensive care for medically complex patients. From interpreting panoramic radiographs and MRI findings to understanding autoimmune disease progression and the role of empathy in patient care, this episode offers practical clinical insight every GP can apply immediately.   If you're looking to stay on the cutting edge of evidence-based dentistry, oral-systemic health, and comprehensive patient care, this episode is a must-listen.

(VIDEO PODCAST)We talk a lot about momentum in voiceover, but what happens when life interrupts that momentum?In this episode of Speechless VO, Aimee Gironimi shares her journey navigating a voiceover career while facing ongoing health challenges, multiple surgeries, and a diagnosis of Ehlers-Danlos Syndrome.This conversation explores what it means to stay relevant, productive, and connected when your path isn't linear, and why redefining success may be the most important shift you can make.If you've ever felt like you're falling behind, this episode offers a different perspective. You may not be behind at all! You may just be building your career in a different way.Sign up for our show takeaways, resources, and drink recipes before episodes air here: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ https://www.speechlessvo.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠RESOURCES mentioned in this episode:Disabled Voice Actors DatabaseNAVA – National Association of Voice ActorsAimee's Demo Services (“VO Demos à la Carte”)Ehlers-Danlos Syndrome awarenessCONTACT INFO:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Podcast Home⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Website⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠YouTube⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Email: SpeechlessVO@gmail.comPRODUCTION CREDITS:Music: Rick WilsonEditing: Hamza LatifWritten and Produced by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Kim Wilson⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Natasha Marchewka⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Production Assistant: Carolyn Robson

In this episode of Beyond The Pain, Leigh Brandon speaks with Daniel C. Rodgers about living with Ehlers-Danlos Syndrome (EDS) — a connective tissue disorder that can lead to hypermobility, repeated injuries, chronic pain, exhaustion, and years of confusion before diagnosis.Daniel shares how the early signs were missed, how serious knee dislocations and surgeries changed the course of his life, and what happened when he finally discovered that EDS was behind so many of his symptoms. He also opens up about the emotional toll of chronic pain, including isolation, frustration, and learning how to adapt without letting the condition define his life.In this conversation, we discuss:early signs of Ehlers-Danlos Syndrome and hypermobilitywhy EDS is often overlooked or misdiagnosedchronic pain, repeated injuries, and recovery setbacksthe mental and emotional impact of living with an invisible conditionhow Daniel manages exercise, activity, and daily life with EDSthe importance of resilience, self-awareness, and self-advocacyDaniel C. RodgersWebsite: https://escapetheclock.com/LinkedIn: https://www.linkedin.com/in/danrodgersYouTube: https://www.youtube.com/channel/UCOJX3vkUPfwzzC3DWGSH-KwLeigh BrandonBeyond The Pain 14-Day Programme: https://bodychek.co.uk/beyond-the-pain-programme/Pain-Free Plate Free Guide: https://www.bodychek.co.uk/freepainguide/Consult with Leigh: https://www.bodychek.co.uk/consultation/

We welcome back Meredith Mangold to shift the conversation from the medical "odyssey" to the human connection. While the first part of Meredith's story (Episode 76) focused on her grueling search for a diagnosis and treatment for ulcerative colitis, POTS, and EDS, in this episode, we explore the essential, and often overlooked, role of support systems. Living with chronic pain at an "8 out of 10" for years isn't just a physical challenge; it's a relational one. Meredith joins hosts Cathy and Beth to discuss what it means to be truly supported when an illness doesn't have an end date. We dive into the nuances of communication, the "guilt of being too much," and the common mistakes well-meaning loved ones make when trying to "fix" a situation that can't be fixed. Whether you are navigating a chronic condition yourself or walking alongside someone who is, this episode offers a masterclass in empathy, validation, and the power of simply being believed.   Episode Topics: Survival vs. Support: Identifying the moments when external support became essential to Meredith's survival during her hardest years of chronic pain. The Anatomy of a Support System: What effective support looks like practically, emotionally, and through "quiet presence." Validation vs. "Fixing": Why well-meaning advice can sometimes feel harmful and how to pivot toward validation and safety. The Burden of Guilt: Navigating the fear of being "too much" for friends and family. Communicating the Invisible: Tips for articulating needs when pain is invisible and chronic. Advocacy without Burnout: How patients can ask for what they need without feeling ashamed. About the Guest: Meredith Mangold, CPXP, is the Founder of Empower Health Strategies and a Certified Patient Experience Professional. After being thrust into the healthcare system at age 20 with severe ulcerative colitis, later followed by diagnoses of POTS and Ehlers-Danlos Syndrome, Meredith dedicated her career to helping healthcare professionals and digital health innovators empathize with the patient journey. She serves on the board of the Chronic Pain Project, is a faculty member for the BiteLabs Fellowship, and collaborates with Johns Hopkins Hospital on patient advocacy initiatives. Resources & Links Mentioned: Meredith's Website: Empower Health Strategies Connect on LinkedIn: Meredith Mangold The Chronic Pain Project: chronicpainproject.org Read Meredith's Story: Emerging from the Fog (Johns Hopkins Medicine) The Chronic Illness Hotline: A text-based peer support line for those navigating chronic illness, pain, and disability. Support their mission or find help at chronicillnesshotline.org. Relevant It Happened To Me Podcast Episodes: #17 Mental Health Help with Social Worker Tamara Blum #25 Pancreatic Cancer with Patient Advocate Leslie Waldman #38 Dr. Tara Zier on Stiff Person Syndrome #66 Not Just Fatigue: Global Advocating for ME/CFS from Bed  #76 When Pain Never Stops: A Survivor's Story of Chronic Pain and Hope (Merdith's First Interview) #77 When Chronic Illness Changes the Tune: A Musician's Journey Through Diabetes and Stroke   Connect With Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Filipino-Australian singer-songwriter daine joins Dylan Alcott and Angus O'Loughlin for a conversation that is equal parts funny, raw, and genuinely important. daine lives with Ehlers-Danlos Syndrome (EDS), POTS, and autism and did not know she was disabled until she was 18. By that point she had already been dismissed by multiple neurologists and cardiologists who told her the chronic pain stopping her from climbing the stairs at school was "just anxiety."She is now preparing to drop her debut album and performing at Ability Fest for the second time. This episode covers late diagnosis, medical gaslighting, spoon theory, invisible illness, the suicide statistics for autistic women that daine thinks about every day, and why she believes being deeply, intensely autistic makes her a better songwriter.If you or someone you know is struggling with mental health, please reach out to Lifeline on 13 11 14 or Beyond Blue on 1300 22 4636.Ability Fest and what it actually means to be inclusivedaine has attended and performed at Ability Fest before and is back on the lineup for 2026. Dylan explains what the festival really is: not a festival for disabled people, but a fully accessible event where everyone can party together. Platforms, pathways, Auslan interpreters, sensory rooms, live captioning, and 100% of proceeds going to the Dylan Alcott Foundation. As Angus puts it, the real point is giving six able-bodied friends the chance to finally share a night out with the one person who could never get through the door before.Get your tickets here: https://megatix.com.au/events/ability-fest-2026 daine is a Filipino-Australian singer, songwriter, and producer living with Ehlers-Danlos Syndrome, POTS, and autism. She is currently finishing her debut album and performing at Ability Fest 2026.Follow daine: https://www.instagram.com/d4ine/ 00:00 Cold open: doctors, stairs, and the diagnosis nobody saw coming02:39 Ability Fest: what it is, why it matters, and daine returning to the lineup04:24 A month in LA and the debut album07:09 Ehlers-Danlos Syndrome: what it is and why it takes ten years to diagnose09:25 The hosepipe analogy: EDS, POTS, and circulation explained10:38 Growing up without a diagnosis and medical gaslighting12:31 Dynamic disability and passing as non-disabled14:27 Good days vs survival days: spoon theory explained16:52 How disability affects the creative process and studio sessions18:13 Why autism is daine's creative superpower19:54 Getting the autism diagnosis at 18 and what it meant21:08 Social battery, sensory overload, and the right kind of socialising23:12 Navigating the music industry with an invisible disability24:34 What a sustainable career looks like25:04 Autistic suicide risk and why visibility matters27:16 Making shows more accessible as an independent artist29:07 Best gig stories: first LA headline and Laneway 2019 in the rain with Charli XCX31:25 Spicy listener questionsdisability podcast Australia, ListenABLE podcast, daine musician, Ehlers-Danlos Syndrome EDS podcast, autism and chronic illness, invisible disability, dynamic disability, spoon theory chronic illness, POTS dysautonomia, autistic artist Australia, Ability Fest Melbourne 2026, neurodiversity and music, medical gaslighting women, late autism diagnosis, autistic women mental health suicide risk, disability representation music industry, Dylan Alcott Foundation, Filipino-Australian artistautism | Ehlers-Danlos Syndrome | EDS | POTS | invisible disability | dynamic disability | spoon theory | medical gaslighting | late diagnosis | Ability Fest 2026 | neurodiversity | mental health | chronic illness | disability representation | Australian podcast | daine | Dylan Alcott | ListenABLE

Life is one giant puzzle and we spend it simply gathering up all the pieces we can and attempting to put them in some sort of working order. This week we're talking the puzzles of life on Outlook - it's nearly Rare Disease Day, an awareness day that is on the final day of February each year, as every four years it will then fall on February 29th, the rarest day of the year. Sister/co-host Kerry is sharing about recently looking into other possible conditions to add to the diagnosis she and brother/co-host Brian seem to be dealing with, as we also discuss more about the rare syndrome we have already been diagnosed with: Senior-Løken syndrome which includes our retinal blindness, kidney disease, and scoliosis. Kerry explains why she's taking things to the next level and what she's doing such as applying to get into a clinic in Toronto for connective tissue disorders and Brian explains the where and when and what of Senior-Løken. Kerry brings props into the studio for this one including a giant marble model of the Earth Barry gifted Kerry and the braille heart puzzle she gave BF Barry for Valentine's Day to illustrate how difficult it can be to sort out proper medical diagnosis for a wide array of physical and mental and emotional symptoms like ours. Also, to make a heart the right way up with the braille in its proper place. For years, as patients and spending plenty of time at children's hospitals, there were always puzzles to keep kids occupied, on tables in waiting rooms. Our older brother follows the steps, as he did when he came in, fully equipped, to figure out what the issue was with Kerry and Barry's surround system speaker while our grandfather always had someone's homemade wooden puzzle for us to figure out when we visited. Other members of our family have always had double jointed fingers, extra flexible feet and hands, enough that a few hundred years ago we could have been in sideshows, but with Kerry's latest symptom of daily foot pain we're reflecting back on our medical past while Kerry receives tests like an ECG of her heart to try to find out more about a possible hyper-mobility condition such as Ehlers-Danlos Syndrome. We discuss running into our old Braille transcriber at a community spaghetti/lasagna dinner, sports including Canada's hockey losses in the Olympics and fantasy baseball starting up again, while BF Barry and Kerry announce they'll be flying with the leprechauns in March, springing once more four or five hours into the future with the clocks about to change and spring ahead. But before March we're finishing up February as the boys share about birthday month and Family Day, which Barry fits right in on, with the weekend guys night to celebrate our brother-in-law's birthday a day after Barry's and BF Barry looks Kerry up by searching her rare conditions, with a rough sounding voice which might be a clue into all the talking that went into attending guy's night. We're extra rare and BF Barry believes it. Dare to be rare and check out more about Rare Disease Day and this year's theme of “Action and Access” with the voices of the rare youth and their voices for change: https://www.rarediseaseday.org

In this fascinating episode of Dr. Lotte: Science with Soul, I sit down with Dr. Linda Bluestein, an international speaker and leading expert on Hypermobility Spectrum Disorders (HSD), Ehlers-Danlos syndromes (EDS), Mast Cell Activation Syndrome (MCAS). With more than 20 years of medical experience, Dr. Bluestein brings a uniquely personal and professional perspective to this important conversation. Once an aspiring ballet dancer, her own experience with Ehlers-Danlos Syndrome changed the course of her life and ultimately led her to become a physician devoted to helping others who live with complex hypermobility conditions. Today she is widely respected for her work and for advancing awareness and research in hypermobility spectrum disorders, Ehlers-Danlos Syndromes, mast cell disorders, and performing arts medicine.

When living with Ehlers-Danlos Syndrome and hypermobility disorders, medications alone rarely resolve all the symptoms. In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Ina Stephens, integrative medicine specialist and Associate Medical Director of the UVA Health EDS and Hypermobility Disorders Center, for a wide-ranging conversation about how lifestyle medicine, nervous system regulation, and whole-body care can dramatically influence outcomes for people with connective tissue disorders.Dr. Stephens explains how her background in infectious disease, vaccinology, and complex care led her to recognize patterns across seemingly unrelated symptoms and why listening deeply to patients often reveals the underlying problem. The discussion explores how nutrition, gut health, vagal nerve tone, sleep quality, and gradual strength building all influence inflammation, fatigue, and autonomic dysfunction in EDS.The episode also dives into the science of the microbiome, why small lifestyle shifts can produce meaningful physiologic change, and how integrative medicine expands the treatment toolbox beyond traditional Western approaches. For patients navigating complex symptoms, and clinicians caring for them, this conversation offers a thoughtful reminder that healing often happens through steady, strategic steps rather than quick fixes. Takeaways: There is rarely a single “magic” treatment for EDS, POTS, or MCAS.  Progress usually comes from strategic sequencing. Overtreating symptoms without addressing underlying patterns can create long-term setbacks. Physical therapy must be individualized in hypermobility, with an emphasis on pacing and trust. Shared decision-making improves outcomes, especially when treatment goals align with what brings the patient meaning and quality of life. Minimally disruptive medicine matters, reducing cognitive, financial, and physical treatment burden is part of effective care. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

When living with Ehlers-Danlos Syndrome and hypermobility disorders, medications alone rarely resolve all the symptoms. In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Ina Stephens, integrative medicine specialist and Associate Medical Director of the UVA Health EDS and Hypermobility Disorders Center, for a wide-ranging conversation about how lifestyle medicine, nervous system regulation, and whole-body care can dramatically influence outcomes for people with connective tissue disorders.Dr. Stephens explains how her background in infectious disease, vaccinology, and complex care led her to recognize patterns across seemingly unrelated symptoms and why listening deeply to patients often reveals the underlying problem. The discussion explores how nutrition, gut health, vagal nerve tone, sleep quality, and gradual strength building all influence inflammation, fatigue, and autonomic dysfunction in EDS.The episode also dives into the science of the microbiome, why small lifestyle shifts can produce meaningful physiologic change, and how integrative medicine expands the treatment toolbox beyond traditional Western approaches. For patients navigating complex symptoms, and clinicians caring for them, this conversation offers a thoughtful reminder that healing often happens through steady, strategic steps rather than quick fixes. Takeaways: There is rarely a single “magic” treatment for EDS, POTS, or MCAS.  Progress usually comes from strategic sequencing. Overtreating symptoms without addressing underlying patterns can create long-term setbacks. Physical therapy must be individualized in hypermobility, with an emphasis on pacing and trust. Shared decision-making improves outcomes, especially when treatment goals align with what brings the patient meaning and quality of life. Minimally disruptive medicine matters, reducing cognitive, financial, and physical treatment burden is part of effective care. Find the episode transcript here. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

EDS or Ehlers-Danlos Syndrome, is something I have been seeing lots more of in the last 5 or so years, so wanted to create a brief overview of what it is and some of the other issues seen associated with EDS.

There is no magic treatment for Ehlers-Danlos Syndrome, POTS, or mast cell activation disorders, but there is strategy. In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dacre Knight, MD, founding Medical Director of the UVA Health EDS and Hypermobility Disorders Center, for a practical and deeply thoughtful conversation about how complex chronic conditions should actually be treated. Rather than chasing quick fixes, Dr. Bluestein and Dr. Knight explore sequencing. What to address first when everything is flaring, how to balance short-term symptom relief with long-term sustainability, and why overtreatment can sometimes cause more harm than good. They discuss the pitfalls of siloed care, the insurance barriers that complicate physical therapy, and the importance of starting low, going slow, and minimizing treatment burden. The episode also tackles difficult but essential questions: What does “getting better” really mean in lifelong connective tissue disorders? How do clinicians avoid reactionary prescribing? And how can patients recognize the difference between a thoughtful care plan and a rushed one? Takeaways: There is rarely a single “magic” treatment for EDS, POTS, or MCAS—progress usually comes from strategic sequencing. Overtreating symptoms without addressing underlying patterns can create long-term setbacks. Physical therapy must be individualized in hypermobility, with an emphasis on pacing and trust. Shared decision-making improves outcomes, especially when treatment goals align with what brings the patient meaning and quality of life. Minimally disruptive medicine matters, reducing cognitive, financial, and physical treatment burden is part of effective care. Find the episode transcript here. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Dacre Knight? https://x.com/knidac Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

There is no magic treatment for Ehlers-Danlos Syndrome, POTS, or mast cell activation disorders, but there is strategy. In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dacre Knight, MD, founding Medical Director of the UVA Health EDS and Hypermobility Disorders Center, for a practical and deeply thoughtful conversation about how complex chronic conditions should actually be treated. Rather than chasing quick fixes, Dr. Bluestein and Dr. Knight explore sequencing. What to address first when everything is flaring, how to balance short-term symptom relief with long-term sustainability, and why overtreatment can sometimes cause more harm than good. They discuss the pitfalls of siloed care, the insurance barriers that complicate physical therapy, and the importance of starting low, going slow, and minimizing treatment burden. The episode also tackles difficult but essential questions: What does “getting better” really mean in lifelong connective tissue disorders? How do clinicians avoid reactionary prescribing? And how can patients recognize the difference between a thoughtful care plan and a rushed one? Takeaways: There is rarely a single “magic” treatment for EDS, POTS, or MCAS—progress usually comes from strategic sequencing. Overtreating symptoms without addressing underlying patterns can create long-term setbacks. Physical therapy must be individualized in hypermobility, with an emphasis on pacing and trust. Shared decision-making improves outcomes, especially when treatment goals align with what brings the patient meaning and quality of life. Minimally disruptive medicine matters, reducing cognitive, financial, and physical treatment burden is part of effective care. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Dacre Knight? https://x.com/knidac Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Have a comment or question? Click this sentence to send us a message, and we might answer it in a future episode.Welcome to Season 6, Episode 7 of Winning Isn't Easy. In this episode, we'll dive into Fighting for Fairness: Navigating ERISA Disability Claims for Rare Disorders.Securing ERISA Long-Term Disability benefits with a rare medical condition often comes down to a hidden challenge: insurer misunderstanding. Disability carriers don't just look at the diagnosis - they evaluate how clearly symptoms are documented, how doctors describe functional limits, and whether medical records explain why you can't work. When a condition is rare or complex, gaps in understanding can quietly lead to delays or denials. In this episode, we break down how ERISA insurers evaluate rare disorders through three examples: Tracheobronchomalacia (TBM), Ehlers-Danlos Syndrome, and DiGeorge Syndrome. By the end, you'll understand why success isn't just about having a rare diagnosis - it's about translating complex medical evidence into clear proof of disability under ERISA.In this episode, we'll cover the following topics:One - Getting Your ERISA Disability Insurance Benefits for TracheobronchomalaciaTwo - Getting Your ERISA Disability Benefits for Ehlers-Danlos SyndromeThree - Getting Your ERISA Long-Term Disability Benefits for DiGeorge SyndromeWhether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.Listen to Our Sister Podcast:We have a sister podcast - Winning Isn't Easy: Navigating Your Social Security Disability Claim. Give it a listen: https://wiessdpodcast.buzzsprout.com/Resources Mentioned in This Episode:LINK TO ROBBED OF YOUR PEACE OF MIND: https://mailchi.mp/caveylaw/ltd-robbed-of-your-piece-of-mindLINK TO THE DISABILITY INSURANCE CLAIM SURVIVAL GUIDE FOR PROFESSIONALS: https://mailchi.mp/caveylaw/professionals-guide-to-ltd-benefitsFREE CONSULT LINK: https://caveylaw.com/contact-us/Need Help Today?:Need help with your Long-Term Disability or ERISA claim? Have questions? Please feel welcome to reach out to use for a FREE consultation. Just mention you listened to our podcast.Review, like, and give us a thumbs up wherever you are listening to Winning Isn't Easy. We love to see your feedback about our podcast, and it helps us grow and improve.Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals.

Soph Myers-Kelley and his mom, René Myers, have always been close. As of five years ago, they also share a diagnosis: the connective tissue disorder Ehlers-Danlos Syndrome. Soph and René were diagnosed one year apart – Soph was 25; René was 60. EDS explained symptoms they'd both been experiencing for decades, including waking up with jaw or shoulder dislocations and having chronic pain.The two talk with Anita about how their diagnoses began a new chapter of their lives, including the decision to move in together last summer.Meet the guests:- Soph Myers-Kelley is a medical librarian at East Carolina University- René Myers is Soph's mom and a retired educatorRead the transcript | Review the podcast on your preferred platformFollow Embodied on Instagram Leave a message for EmbodiedPlease note: This episode originally published February 20, 2025.

You can listen wherever you get your podcasts or check out the fully edited transcript of our interview at the bottom of this post.In this episode of The Peaceful Parenting Podcast, I interview Jessica Slice, a disability activist and the author of Unfit Parent, a Disabled Mother Challenges an Inaccessible World. We discuss the effect of Jessica's disability on her life and parenting, and what non-disabled parents can learn from her about parenting.Know someone who might appreciate this episode? Share it with them!

This week on Not Your Granny's Quilt Show, my guest is Cole Whitaker of Cole's Quilts. Cole is an educator at Bellevue College in Washington, a quilt designer, and a custom longarmer whose work is as thoughtful as it is stunning.Cole learned to sew at the age of five from his grandmother, planting a creative seed that stayed with him throughout his life. After high school, he channeled that creativity into the world of cosmetology, spending twenty years teaching and mentoring students. Over time, physical limitations led Cole to step away and seek answers, eventually receiving diagnoses of Ehlers Danlos Syndrome and autism. Leaning into his love of learning, Cole earned a Master of Science degree in Psychology and found a calling in supporting neurodivergent students in higher education.Throughout all of this, quilting remained a constant. Cole did not feel at home in traditional piecing and chose instead to trust his skills and pursue his own creative vision. That leap paid off in a big way. His quilt earned Best of Show at the International Quilt Festival in Long Beach, traveled to Houston, and later won second place for Piecing at QuiltCon. The experience was life changing and showed Cole that he could thrive in education while also creating quilts that deeply resonate with others.Today, Cole balances teaching with quilting. He designs quilt patterns, sells kits, hosts sew alongs, and provides custom longarm services. His love for the quilting community shines through in everything he does. Visit www.colesquilts.comto explore Cole's work and learn more about Cole's Quilts Academy. This is a powerful and inspiring conversation you will not want to miss.Want to see more? You can find it here: Find Podcast Merch here! nygqs.printify.me Instagram: https://www.instagram.com/notyourgrannysquiltshow https://www.instagram.com/sweetpeadesigncompany YouTube: https://youtube.com/@notyourgrannysquiltshow Get episodes ad free at Patreon: patreon.com/notyourgrannysquiltshow Want to be on the show? Send us a message

What happens to a relationship when chronic illness enters the picture?For many women in midlife, a diagnosis doesn't just affect the body, it reshapes roles, routines, identity, intimacy, and the emotional fabric of our closest relationships. And without the right support, even the strongest partnerships can quietly shift from connection to survival mode.In this episode of Message in the Middle, I'm joined by Lisa Gray, LMFT, a licensed marriage and family therapist who specializes in high-conflict couples and couples navigating chronic illness and pain. After spending a decade as an air traffic controller and peer debriefing counselor, Lisa transitioned into the mental health field and in 2009, her own diagnosis of Ehlers-Danlos Syndrome deepened and transformed her work in a powerful way.Lisa brings both professional expertise and lived experience to this conversation, along with a hopeful, grounded belief that relationships can grow stronger even in the middle of uncertainty and change. We talk about how chronic illness impacts partnership dynamics, communication, intimacy, identity, and how couples can move beyond survival toward true connection.We explore:How a chronic illness diagnosis reshapes relationship dynamicsCommunicating needs without guilt or fear of being a burdenAvoiding the caregiver–patient trap while staying supportiveNavigating changing roles and identities without resentmentRebuilding intimacy and emotional closenessRelationship NegotiationsWhat it really means to thrive, not just survive, as a coupleLisa is the author of Thriving in a Relationship When You Have Chronic Illness: Navigate Challenges and Keep Your Relationship Strong Using Acceptance and Commitment Therapy and shares practical insight, compassion, and hope throughout this conversation.If you're in a season of rediscovery, wanting to feel more rooted, more connected, and more like yourself again, this episode is for you.Connect with Lisa:Instagram - @lisagraymft and @therapybooknookPractice website - www.lisagraymft.comAuthor website - https://www.lisagrayauthor.com Connect with Marianne: Website: Message In The Middle with Marianne Message In the Middle Facebook Group: https://www.facebook.com/groups/422430469323847/ YouTube: https://www.youtube.com/@MessageInTheMiddle/playlists LinkedIn: https://www.linkedin.com/in/marianne-demello-smith-678b9966 Email: Contact | Message In The Middle with Marianne Subscribe to Message In the Middle: Apple Podcasts Spotify YouTube Leave Us a Review: If you enjoyed today's episode, please leave a review and share your favorite takeaway. Your feedback helps us reach more listeners and bring you even more valuable content.Keep the conversation going - Join us for more insightful conversations in the Message in the Middle Private Facebook Community & subscribe to Message in th...

What would it look like if people with Ehlers-Danlos Syndrome finally had a true medical home? In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Ina Stephens and Dr. Dacre Knight to share the story behind the newly launched University of Virginia Ehlers-Danlos Syndrome Center, how it came to be, why it was urgently needed, and what makes it fundamentally different from traditional models of care. The conversation explores the power of integrative, multidisciplinary care, the consequences of fragmented systems, and why early recognition, especially in pediatric patients, can profoundly change lifelong outcomes. Dr. Stephens and Dr. Knight discuss what patients can expect when seeking care at UVA, how research and clinical care are being built together, and why clinician education is essential to closing long-standing gaps in EDS care. The episode also features a major announcement: a new collaboration between Bendy Bodies and the UVA EDS Center, uniting global patient education with academic medicine to help reshape how connective tissue disorders are understood, taught, and treated worldwide. For anyone searching for what meaningful progress in EDS care could look like, this conversation offers a glimpse of what's possible. Takeaways: EDS care is most effective when it's coordinated, not scattered across disconnected specialties. Early diagnosis, particularly in children, can prevent years of physical and emotional harm. An “EDS home” model helps reduce gaslighting, burnout, and fragmented care. Academic medicine is beginning to catch up, creating space for evidence-informed, compassionate treatment. Education itself is a form of care, benefiting both patients and clinicians navigating complex conditions. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Dacre Knight? https://x.com/knidac Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

What would it look like if people with Ehlers-Danlos Syndrome finally had a true medical home? In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Ina Stephens and Dr. Dacre Knight to share the story behind the newly launched University of Virginia Ehlers-Danlos Syndrome Center, how it came to be, why it was urgently needed, and what makes it fundamentally different from traditional models of care. The conversation explores the power of integrative, multidisciplinary care, the consequences of fragmented systems, and why early recognition, especially in pediatric patients, can profoundly change lifelong outcomes. Dr. Stephens and Dr. Knight discuss what patients can expect when seeking care at UVA, how research and clinical care are being built together, and why clinician education is essential to closing long-standing gaps in EDS care. The episode also features a major announcement: a new collaboration between Bendy Bodies and the UVA EDS Center, uniting global patient education with academic medicine to help reshape how connective tissue disorders are understood, taught, and treated worldwide. For anyone searching for what meaningful progress in EDS care could look like, this conversation offers a glimpse of what's possible. Takeaways: EDS care is most effective when it's coordinated, not scattered across disconnected specialties. Early diagnosis, particularly in children, can prevent years of physical and emotional harm. An “EDS home” model helps reduce gaslighting, burnout, and fragmented care. Academic medicine is beginning to catch up, creating space for evidence-informed, compassionate treatment. Education itself is a form of care, benefiting both patients and clinicians navigating complex conditions. Find the episode transcript here. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Dacre Knight? https://x.com/knidac Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Do you live with a chronic illness? In this episode, I talk with Nadine Pinede about softening into compassion and:  • Adjusting to a diagnosis of chronic illness as a highly sensitive person  • Listening to the body's signals with curiosity instead of frustration  • Learning to pace yourself and find community to live more sustainably • Finding the wisdom and resilience in health challenges  Nadine Pinede is the daughter of Haitian exiles, an award-winning author and poet, and a mindful self-compassion guide whose work explores healing and belonging through story and nature. A Rhodes Scholar and lifelong creative, she teaches others how to reconnect with the natural world as founder of “Coming to Our Senses” retreat in Arles, which was inspired by her recent diagnosis of Ehlers-Danlos Syndrome. Her debut novel When the Mapou Sings was named an Américas Award Honor Book. Her forthcoming publications are the anthology Earth is a Living Thing: Black Poets and the Natural World, Uprooted: A Journey in Poems, and Soundwalker: A True Story of Making Music with Nature. Keep in touch with Nadine: • Website: https://nadinepinede.com/  • Instagram: https://www.instagram.com/nadinepinede  • LinkedIn: https://www.linkedin.com/in/nadinepinede  Resources Mentioned: • Coming to Our Senses Retreat: https://www.comingtooursensesretreat.com • When the Mapou Sings by Nadine Pinede: https://bookshop.org/a/63892/9781536235661  • Uprooted: A Journey in Poems: https://www.terranovapress.com/books/uprooted   • Self-Compassion Break: https://self-compassion.org/practices/general-self-compassion-break-2  • EDS Society: https://www.ehlers-danlos.com  Thanks for listening! You can read the full show notes and sign up for my email list to get new episode announcements and other resources at: https://www.sensitivestories.comYou can also follow "SensitiveStrengths" for behind-the-scenes content plus more educational and inspirational HSP resources: Instagram: https://www.instagram.com/sensitivestrengths TikTok: https://www.tiktok.com/@sensitivestrengths Youtube: https://www.youtube.com/@sensitivestrengths And for more support, attend a Sensitive Sessions monthly workshop: https://www.sensitivesessions.com. Use code PODCAST for 25% off. If you have a moment, please rate and review the podcast, it helps Sensitive Stories reach more HSPs! This episode is for educational purposes only and is not intended as a substitute for treatment with a mental health or medical professional. Some links are affiliate links. You are under no obligation to purchase any book, product or service. I am not responsible for the quality or satisfaction of any purchase.

Send us a textDr. Akilah Cadet is all the hyphenates: CEO of Change Cadet (creating meaningful change behind some of the biggest brands you use everyday), leader, speaker, creative director, producer, writer (White Supremacy is all Around: Notes from a Black Disabled Woman in a White World), co-owner of the Roots and Soul soccer teams, and podcast host of Humane Rights, to name a few.We sit down virtually to talk the magic of Oakland, the importance of harmony over balance, suffering from Ehlers-Danlos Syndrome, how she became a sports team owner, and why it is more important than ever to support BIPOC and marginalized voices and businesses.Buy Akilah's book White Supremacy is all Around: Notes from a Black Disabled Woman in a White WorldListen to Humane RightsFollow Dr. Akilah Cadet on IGSupport the showThanks for listening and for your support! We couldn't have won Best of the Bay Best Podcast in 2022 , 2023 , and 2024 without you! -- Fight fascism. Shop small. Use cash. Fuck ice. -- Support Bitch Talk here! Subscribe to our channel on YouTube for behind the scenes footage! Rate and review us wherever you listen to podcasts! Visit our website! www.bitchtalkpodcast.com Follow us on Instagram, Threads, and Substack Listen every Monday at 7 am on BFF.FM

In this episode look at some rarer diagnoses, how they come to light and how they can be hard to live with and diagnose.Links: Pyrrole Disorder (not recognised in conventional medicine): https://www.healthline.com/health/pyrrole-disorderAcademic analysis of pyrroles (deep dive): https://academic.oup.com/labmed/article/55/3/334/7271490Patent foramen ovale: https://www.mayoclinic.org/diseases-conditions/patent-foramen-ovale/symptoms-causes/syc-20353487Migraines and PFO: https://www.migrainedisorders.org/diving-into-the-connection-between-migraine-and-patent-foramen-ovale/Ehlers-Danlos Syndrome: https://my.clevelandclinic.org/health/diseases/17813-ehlers-danlos-syndromeSave your life in slow motion and those of others by subscribing now and sharing. Thank you for listening and for your support. It means a lot to me. Hosted on Acast. See acast.com/privacy for more information.

In this episode, Dr. Linda Bluestein is joined by Dr. Eric Singman, a neuro-ophthalmologist who lives at the intersection of the eyes, the brain, and the complex symptoms so many people with Ehlers-Danlos Syndrome experience. They dig into why EDS patients often struggle with vision even when everything looks “normal,” why convergence problems and visual fatigue are so common, and how conditions like POTS, mast cell activation, Chiari malformation, and cervical instability quietly affect how we see. They also talk about dry eye, visual snow, glare sensitivity, elevated intracranial pressure without papilledema, and why so many EDS patients are sent down expensive treatment paths that may not actually help. This conversation is part science, part myth-busting, and part reality check for anyone who's been told their symptoms don't make sense. If you've ever felt dismissed, confused, or overwhelmed by eye and vision issues in connective tissue disorders, this one's for you. Takeaways: Normal eye exams don't mean your vision problem isn't real, especially for people with EDS. Many vision symptoms in EDS are collateral damage, not primary eye disease. Convergence issues are often blamed, but fatigue, cognition, and neck instability may be the real drivers. Dry eye in EDS is more complex than “use drops”, especially with mast cell involvement. The neck may be the missing piece in vision, brain fog, headaches, and reading difficulty. Find the episode transcript here. Want more Dr. Eric Singman? https://www.umms.org/find-a-doctor/profiles/dr-eric-lowell-singman-md-1881654804 Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, Dr. Linda Bluestein is joined by Dr. Eric Singman, a neuro-ophthalmologist who lives at the intersection of the eyes, the brain, and the complex symptoms so many people with Ehlers-Danlos Syndrome experience. They dig into why EDS patients often struggle with vision even when everything looks “normal,” why convergence problems and visual fatigue are so common, and how conditions like POTS, mast cell activation, Chiari malformation, and cervical instability quietly affect how we see. They also talk about dry eye, visual snow, glare sensitivity, elevated intracranial pressure without papilledema, and why so many EDS patients are sent down expensive treatment paths that may not actually help. This conversation is part science, part myth-busting, and part reality check for anyone who's been told their symptoms don't make sense. If you've ever felt dismissed, confused, or overwhelmed by eye and vision issues in connective tissue disorders, this one's for you. Takeaways: Normal eye exams don't mean your vision problem isn't real, especially for people with EDS. Many vision symptoms in EDS are collateral damage, not primary eye disease. Convergence issues are often blamed, but fatigue, cognition, and neck instability may be the real drivers. Dry eye in EDS is more complex than “use drops”, especially with mast cell involvement. The neck may be the missing piece in vision, brain fog, headaches, and reading difficulty. Find the episode transcript here. Want more Dr. Eric Singman? https://www.umms.org/find-a-doctor/profiles/dr-eric-lowell-singman-md-1881654804 Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Theo Newbold featured in a 2022 careers article about sizeism in science which discussed some accommodations that could make a difference in the workplace. Some follow-up comments on the discussion platform Reddit questioned whether Newbold and other interviewees in the article were suited to a career in academia.Newbold, a PhD student in plant pathology and diversity, equity and inclusion advocate at Pennsylvania State University in University Park, says the feedback made her feel “as someone who doesn't want to be perceived as the complaining fat person.”They are joined by Katharine Hubert, who was diagnosed by Ehlers Danlos Syndrome, a connective tissue disorder, shortly after starting a PhD at the University of Wisconsin Madison in 2019. The two researchers discuss some of the workplace accommodations and attitudinal changes that could make academia a more welcoming environment.This is the third episode of Off Limits, a podcast series exploring topics that are often perceived as taboo in the workplace.Previous episodes feature activist academics who join campus protests and civil disobedience activities. Future episodes will include the experiences of religious scientists at work, and bereavement. Hosted on Acast. See acast.com/privacy for more information.

When Patricia Weltin's daughters were diagnosed with Ehlers-Danlos Syndrome after years of uncertainty, she turned her frustration into a global movement. In this episode of Sounds of Science, Patricia shares the story behind Beyond the Diagnosis, a powerful art and advocacy initiative that uses portraiture to humanize rare diseases and inspire empathy in medical professionals, students, and communities around the world. From medical schools to courthouses and even Parisian galleries, the traveling exhibit is reshaping how we see children with rare diseases—not as diagnoses, but as vibrant individuals with stories worth telling. Tune in to hear how Patricia's mission is bridging the gap between science and compassion, and how you can help carry it forward.Show NotesFrom Mystery to Medicine: The Science Behind a Mother's Search | PodcastTaking a Customized and Collaborative Approach to Therapeutic Development | PodcastRare Disease Research for Drug Development | Charles RiverRare Disease | Charles RiverDiscovery | Charles RiverBeyond The Diagnosis

Why You Should Listen:  In this episode, you will discover how addressing parasites and dental issues can unlock better health and why real healing is rarely an Accidental Cure. About My Guest: My guest for this episode is Dr. Simon Yu.  Simon Yu, MD combines internal medicine with integrative medicine at Prevention and Healing, Inc., in St. Louis, MO.  As an HMO regional medical director, he saw the limits of a medication-management approach to patients with complex chronic illness.  He studied integrative and biological medicine, took 300 hours of medical acupuncture training, and researched dental, fungal, and parasite problems.  He served as a medical officer in the U.S. Army Reserve for 25 years, retiring as a full colonel.  Dr. Yu lectures in the US and abroad. He offers Acupuncture Meridian Assessment (AMA) Training to help detect problems for doctors and dentists in St. Louis and in Germany.  He has an MD from the University of Missouri School of Medicine, has an MS in Immunology, is certified by the American Board of Internal Medicine, a member of American College of Physicians, and is on the advisory board of the International College of Integrative Medicine.  Key Takeaways: Where does Artificial Intelligence fit in addressing complex, chronic illnesses? What are the more common patterns of meridian dysregulation observed? How are most parasites acquired? Are parasites always bad for the body? What are the more common medications used to address parasites? Does mold in the external environment impact parasite treatment or dental interventions? Are all parasites that impact health physical? How is the treatment of fungal issues approached? Should patients test their home for mold? What types of dental issues are most commonly impacting patients? How does testing for the DNA of oral pathogens inform treatment? What long-term oral hygiene strategies may be helpful? Are implants appropriate after an extraction? How has treating complex patients changed with COVID? Is spike protein detoxification now part of the healing approach? Do EMFs negatively impact health? Are conditions such as Ehlers-Danlos Syndrome and Morgellons approached differently? What are some top detoxification strategies? Is "autoimmunity" the result of chronic infections? What is the best approach for optimizing the microbiome? What are some of the emerging treatment interventions from SOZO Brain Clinic? Connect With My Guest:  PreventionAndHealing.com Related Resources: Book - Accidental Cure 3: AI vs. Ancient Intelligence Interview Date: January 7, 2026 Transcript: To review a transcript of this show, visit https://BetterHealthGuy.com/Episode227. Support the Show: To support the show and Buy Me a Coffee, visit https://betterhealthguy.link/BuyMeACoffee. Additional Information: To learn more, visit https://BetterHealthGuy.com. Follow Me on Social Media: Facebook - https://facebook.com/betterhealthguy Instagram - https://instagram.com/betterhealthguy X - https://twitter.com/betterhealthguy TikTok - https://tiktok.com/@betterhealthguy Disclaimer:  The content of this show is for informational purposes only and is not intended to diagnose, treat, or cure any illness or medical condition. Nothing in today's discussion is meant to serve as medical advice or as information to facilitate self-treatment. As always, please discuss any potential health-related decisions with your own personal medical authority. 

It's a new year and we are finding out about the hopes and aspirations of three young disabled people around the UK. At 17, Niamdh is School Captain at her college in Scotland and hoping for a career in politics. She took her council to court not too long ago and won a case which now ensures she gets adequate BSL support in the classroom - since then, she's been flying. Seren has just started a new job in social media and is loving it. She has 750k of her own followers. But being blind means it hasn't always been easy to get companies to take her seriously when she applies for jobs. Seren gives some thoughts on when you should declare your disability on a job application and how she has landed a job in a supportive company. And Izemrasen is 27 and working as a personal trainer in a gym. He's adapted his aspirations and career goals over the years due to creeping Ehlers Danlos Syndrome - a connective tissue disorder. He has become a regular wheelchair user and gives some top tips on how to find your voice and ask for the support you need. Plus, BBC journalist Kit Taylor gives analysis on the bigger picture for young people. Presented by Emma Tracey Sound mixed by Dave O'Neill Produced by Alex Collins Series producer is Beth Rose Editor is Damon Rose

Tim Kaufman's journey is nothing short of remarkable. Diagnosed with Ehlers-Danlos Syndrome—an inherited condition affecting collagen that impacts the heart, joints, and tendons—Tim found himself in a dark place by 2011, struggling with food, alcohol, and painkiller addiction, compounded by morbid obesity. His inspiring recovery through a plant-based diet led him to complete the Lake Placid Ironman in 2024 while sustaining an incredible 200 lb weight loss. Tim shares his transformative story in his book Escape. Learn more about his journey at fatmanrants.com.

Today we are featuring two articles that relate to moving genetics into mainstream healthcare. In our first segment, we discuss polygenic risk scores and the transition from research to clinical use. Our second segment focuses on hypermobility Ehlers Danlos Syndrome and the triaging of clinical referrals.    Segment 1: Readiness and leadership for the implementation of polygenic risk scores: Genetic healthcare providers' perspectives in the hereditary cancer context   Dr Rebecca Purvis is a post-doctoral researcher, genetic counsellor, and university lecturer and coordinator at The Peter MacCallum Cancer Centre and The University of Melbourne, Melbourne, Australia. Dr Purvis focuses on health services delivery, using implementation science to design and evaluate interventions in clinical genomics, risk assessment, and cancer prevention.   In this segment we discuss: - Why leadership and organizational readiness are critical to successful clinical implementation of polygenic risk scores (PRS). - How genetic counselors' communication skills position them as key leaders as PRS moves from research into practice. - Readiness factors healthcare systems should assess, including culture, resources, and implementation infrastructure. - Equity, standardization, and implementation science as essential tools for responsible and sustainable PRS adoption. Segment 2: A qualitative investigation of Ehlers-Danlos syndrome genetics triage   Kaycee Carbone is  a genetic counselor at Boston Children's Hospital in the Division of Genetics and Genomics as well as the Vascular Anomalies Center. Her clinical interests include connective tissue disorders, overgrowth conditions, and somatic and germline vascular anomaly conditions. She completed my M.S. in Genetic Counseling at the MGH Institute of Health Professions in 2023. The work she discusses here, "A qualitative investigation of Ehlers-Danlos syndrome genetics triage," was completed as part of a requirement for this graduate program.    In this segment we discuss: - Why genetics clinics vary widely in how they triage referrals for hypermobile Ehlers-Danlos syndrome (hEDS). - How rising awareness of hEDS has increased referral volume without clear guidelines for diagnosis and care. - The ethical and emotional challenges genetic counselors face when declining hEDS referrals. - The need for national guidelines and clearer care pathways to improve access and coordination for EDS patients. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this week's episode of Full of Beans, I'm joined by Ailidh Musgrave, an eating disorder campaigner, whose story spans years of misdiagnosis, medical trauma, and being repeatedly told she was “too complex” to treat.Ailidh was diagnosed with anorexia at 13, and spent her teens and early adulthood in a cycle of nine inpatient admissions, severe depression, self-harm, sepsis, multiple surgeries and even temporary paralysis. Alongside her eating disorder, she lives with autism and Ehlers-Danlos Syndrome, which went misunderstood or dismissed for years.Now, two years out of hospital, back in education and moving in with her partner, Ailidh is using her experience to push for safer, more compassionate care and to challenge the Assisted Dying Bill through the #DyingForTreatment campaign.In this conversation, Ailidh shares what it's like to be rejected from over 20 hospitals, labelled “too complex”, and still find her way back to life – and why she believes no one with anorexia should ever be put on a palliative pathway.This week, we discuss:Misdiagnosis, gastrointestinal symptoms and the long road to an EDS diagnosisThe dramatic shift from CAMHS to adult servicesHow autism and neurodivergence were misunderstood in eating disorder treatmentBeing turned away by over 20 hospitals and the “postcode lottery” of careWhy Ailidh is speaking out against the Assisted Dying Bill and the risk for people with anorexiaThe power of time, trust and being truly listened to in recoveryHow her mum held onto hope when she couldn't – and why hope is the most important thing clinicians can offerLived experience and family perspectives are essential if we want eating disorder care to be truly compassionate, person-centred and safe. Ailidh's story is a powerful reminder that no one is beyond help, no matter how long or how complex their journey has been.Timestamps:01:20 – Ailidh's Experience of Inpatient Admissions05:50 – CAMHS vs Adult Inpatient Care09:40 – Autism and Misunderstanding14:10 – EDS Diagnosis and Medical Trauma18:30 – 9 Admissions in 13 Years24:20 – Community Aftercare and Service Gaps29:00 – Concerns About The Assisted Dying Bill36:40 – Finding Internal Motivation For Recovery43:10 – The Impact On FamilyResources & LinksConnect with Ailidh on LinkedInConnect with Us:Subscribe to the Full of Beans Podcast hereFollow Full of Beans on Instagram hereCheck out our website hereListen on YOUTUBE here⚠️ Trigger Warning: Mentions of eating disorders. Please take care when listening.If you enjoyed this episode, don't forget to subscribe, rate, and share the podcast to help us spread awareness.Sending positive beans your way, Han

In this week's episode I sat down with Hillary Wool. Hillary is a disabled business strategist, model, and advocate reshaping how we think about ambition, style, and wellness for chronically ill and disabled women. As a partner at Boston Consulting Group, she led global research on the disabled workforce experience, which was covered in outlets including The New York Times and Forbes. She has also modeled in national campaigns with Target and Marshalls. Online, she shares her disability journey living with ankylosing spondylitis and Ehlers-Danlos Syndrome, including intentional style and adaptive fitness. We discuss being a disabled woman at the intersection of style and advocacy, good girl grief, navigating between what's right with our bodies and what's right for our careers and much, much more.All proceeds from purchasing this episode on my Patreon will be split between City Harvest and Food Bank For NYC. Join The Patreon: ⁠HERE⁠Follow Hillary: Instagram: @hilla_rose TikTok: @hilla_roseFollow Me: Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠@jill_ilana⁠⁠⁠⁠⁠⁠⁠⁠⁠ , ⁠⁠⁠⁠⁠⁠⁠⁠⁠@alwayslookingup.podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠ TikTok: ⁠⁠⁠⁠⁠⁠⁠⁠⁠@jillian_ilana⁠⁠⁠⁠⁠⁠⁠⁠⁠ Website: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.jillianilana.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Email: ⁠⁠⁠⁠⁠⁠⁠⁠⁠alwayslookingup227@gmail.com⁠⁠⁠⁠⁠⁠⁠⁠⁠Read With Me:⁠⁠⁠⁠⁠⁠⁠⁠⁠Goodreads⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠The StoryGraph⁠⁠⁠⁠⁠⁠⁠⁠⁠All episodes are edited and produced by Ben Curwin.Support Those Impacted By The Cutting Of SNAP Benefits:Feeding America: ⁠⁠https://www.feedingamerica.org⁠⁠World Central Kitchen: ⁠⁠https://wck.org⁠⁠No Kid Hungry: ⁠⁠https://www.nokidhungry.org⁠⁠List Of NYC Food Pantries: ⁠⁠https://www.nyc.gov/site/dycd/services/food_pantries.page⁠⁠Support Immigrant Communities (all links came from ⁠⁠⁠⁠⁠⁠⁠⁠⁠@chnge⁠⁠⁠⁠⁠⁠⁠⁠⁠):The Coalition for Humane Immigrant Rights of Los Angeles (⁠⁠⁠⁠⁠⁠⁠⁠⁠@chirla_org⁠⁠⁠⁠⁠⁠⁠⁠⁠): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.chirla.org/donatenow/⁠⁠⁠⁠⁠⁠⁠⁠⁠Immigrant Defenders Law Center (⁠⁠⁠⁠⁠⁠⁠⁠⁠@immdef_lawcenter⁠⁠⁠⁠⁠⁠⁠⁠⁠): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.immdef.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Inland Coalition 4 Imm Justice (⁠⁠⁠⁠⁠⁠⁠⁠⁠@ic4ij⁠⁠⁠⁠⁠⁠⁠⁠⁠): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://secure.actblue.com/donate/jornaleros⁠⁠⁠⁠⁠⁠⁠⁠⁠Relief For Disabled People Impacted By The Los Angeles Fires:Richard Devylder Disaster Relief Fund: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://disabilitydisasteraccess.org/rd-relief-fund/⁠⁠⁠⁠⁠⁠⁠⁠⁠United Spinal Disaster Relief Grant: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://unitedspinal.org/disaster-relief-grant/⁠⁠⁠⁠⁠⁠⁠⁠⁠Inevitable Foundation Emergency Relief Fund: ⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.inevitable.foundation/erf⁠

Jaz races in the Hanse 303 and RS Venture Connect SCS classes, and sails an Albin Vega 27, in which she recently became the first wheelchair user to sail solo and unassisted around Great Britain and Ireland, and doing so confronted and overcame great difficulties. She lives with Ehlers-Danlos Syndrome,  which means her connective tissue does not function properly, and this also effects her internal organs, and her condition is terminal. Regardless, Jaz is now preparing to compete in the 2026 Worldstar, in which she will attempt to sail solo nonstop unassisted around the world. We talk about her introduction to sailing on a cold wet day in the Cornish Harbor, her obsession with the ocean, growing up with a difficult home situation, being homeless as a child and living on the street, then sleeping in the boats at the sailing club, dealing with fear, living on a shorter time line, finding a new family, comparing the Albin Vega to performance boats, heaving-to, sleeping while solo, hallucinations, breakages, preventers, Project Fear, how the circumnavigation of Britain and Ireland changed her, the extents of her mobility, foul-weather gear, beautiful moments, wildlife, running aground 50 nm from the finish and kedging off, the WorldStar 2026, and more. Photos and links are on the podcast shownotes page Support the show through Patreon

Researchers Evaluate Oral Health Quality of Life in Women with Ehlers-Danlos Syndrome and Temporomandibular DisordersBy Today's RDH ResearchOriginal article published on Today's RDH: https://www.todaysrdh.com/researchers-evaluate-oral-health-quality-of-life-in-women-with-ehlers-danlos-syndrome-and-temporomandibular-disorders/Need CE? Start earning CE credits today at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://rdh.tv/ce⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Get daily dental hygiene articles at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.todaysrdh.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Follow Today's RDH on Facebook: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.facebook.com/TodaysRDH/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Follow Kara RDH on Facebook: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.facebook.com/DentalHygieneKaraRDH/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Follow Kara RDH on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/kara_rdh/

Dr. Audrey Kershaw returns to chat with Dr. Linda Bluestein and demystify wisdom tooth extraction, appliances for TMJ disorder, and everyday oral health habits for people with EDS/HSD. We cover when third molars should be removed (and when they shouldn't), why local anesthetic can fail in some patients, how to approach dental procedures when CCI (craniocervical instability) is a concern, and what truly drives gum disease vs “EDS-specific” issues. We also address periodontal EDS (a rare subtype), toothpaste choices (fluoride vs hydroxyapatite vs chelators), and the surprisingly powerful habit of “spit, don't rinse.” Stay to the end for practical Hypermobility Hacks you can implement tonight. Takeaways Is wisdom teeth surgery happening too often… or dangerously too late? What if the biggest risk during oral surgery isn't the tooth—but how your neck is positioned? Why do some people with EDS feel every cut and drill—even after “getting numb”? Could one cheap hack—“spit, don't rinse”—protect your teeth better than $30 toothpaste? Are sharks hiding the secret to stronger enamel in your bathroom cabinet? Find the episode transcript here. References: 2012 Paper- The effects of NICE guidelines on the management of third molar teeth: https://pubmed.ncbi.nlm.nih.gov/22955790/ 2020 RCS Guidelines on Third Molars: https://www.rcseng.ac.uk/-/media/files/rcs/fds/guidelines/3rd-molar-guidelines--april-2021-v2.pdf AAOMS Guidelines on Third Molar Management: https://aaoms.org/wp-content/uploads/2024/03/management_third_molar_white_paper.pdf Bendy Bodies Podcast on Preparing for Surgery with Linda Bluestein, MD: https://www.bendybodiespodcast.com/58-preparing-for-surgery-with-linda-bluestein-md/ GIRFT RCS TMD Document: Comprehensive-guideline-Management-of-painful-Temporomandibular-disorder-in-adults-March-2024.pdf Dr. Mike Harrison's Talk on EDS Support UK: https://www.ehlers-danlos.org/information/webinar-with-dr-mike-harrison-on-why-dental-issues-occur-with-connective-tissue-disorder/ EDS and Dental Issues Talk by Ines and Ulrike: https://www.youtube.com/watch?v=Lsf0YEeps5c&t=65s EDS Society on Periodontal EDS: https://www.ehlers-danlos.com/peds/ Austrian Conversation on pEDS (PubMed): https://pubmed.ncbi.nlm.nih.gov/28836281/ Genetics Home Reference on Ehlers-Danlos Syndrome: https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome#statistics Perioperative Care in Patients with Ehlers Danlos Syndromes (SCIRP): https://www.scirp.org/journal/paperinformation?paperid=97524 Want more Dr. Audrey Kershaw? Facebook: ⁠https://www.facebook.com/audrey.kershaw.3⁠ Want more Dr. Linda Bluestein, MD? Website:  ⁠⁠https://www.hypermobilitymd.com/⁠⁠. YouTube: ⁠⁠⁠youtube.com/@bendybodiespodcast⁠⁠⁠  Instagram: ⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠  Facebook: ⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠  X: ⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠  LinkedIn: ⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠  Newsletter: ⁠⁠⁠https://hypermobilitymd.substack.com/⁠⁠⁠ Shop my Amazon store ⁠⁠⁠https://www.amazon.com/shop/hypermobilitymd⁠⁠ To check out all of my favorite products, please click on this link: ⁠⁠https://www.hypermobilitymd.com/productswelove 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!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

What do we mean when we see the word "Trifecta" ? ​In Horse Racing you would be talking about a bet where you must pick the first, second, and third-place horses in the precise order they finish.   In skincare, "The Trifecta" can refer to a set of three essential skincare products that work together for visible results, like a cleanser, serum, and moisturizer. But in this show where we discuss healthcare conditions, "medical trifecta" refers to the three specific diseases which are often found to occur together.  For today's show that means EDS, (Ehlers Danlos Syndrome)  POTs (Postural Orthostatic Tachycardia Syndrome) & MCAS (Mast Cell Activation Syndrome) and our guest is Candace Johnson.  Candace is a mom of three girls and a chronic illness advocate. She shares her journey living with what many of us call “the trifecta”: POTS, MCAS, and Ehlers Danlos Syndrome. She also has small fiber neuropathy. Her goal is to bring awareness, especially for people still searching for answers and to remind others they're not alone in this.  ​  

Want to fall in love with your ADHD brain and make it work for you? Learn more about my patented program, Your ADHD Brain is A-OK Academy  here: programs.tracyotsuka.com/signup___Nobody prepares you for ADHD pregnancy brain. Decisions become impossible when choosing between 200 strollers for a baby you've never met, how appointments can completely derail your routine, and focus. The brain fog that hits like a wall, or the surprising clarity that some women experience when hormones align just right with their neurodivergent wiring.Dr. Kalin Johnson is back, and this time she's sharing what she learned from experiencing pregnancy, childbirth, and early motherhood with ADHD firsthand. Diagnosed with ADHD, autism, PTSD, and hypermobile Ehlers-Danlos Syndrome in adulthood, Kalin recently welcomed her daughter Indie Rue—and discovered just how much the medical system doesn't prepare ADHD women for this journey.In this episode, Tracy and Kalin explore the hormonal rollercoaster of each trimester, why some ADHD women experience incredible focus during pregnancy while others struggle with brain fog, and how conditions like MCAS, dysautonomia, and hypermobility intersect with ADHD. They dive deep into medication decisions, the realities of postpartum life, and why being kinder to yourself isn't optional—it's essential for being the parent you want to be.Whether you're thinking about pregnancy, currently pregnant, or supporting someone who is, this conversation will give you the real talk nobody else is having—and the science to back it up.Resources:Website: https://www.kalinjohnson.com Instagram: https://www.instagram.com/kalinpharmd LinkedIn: https://www.linkedin.com/in/kalin-johnsonpharmd YouTube: https://www.youtube.com/@queensoftheneuroverse?si=kuneU-Fcnz1Ea2RI&sub_confirmation=1  Spotify: https://open.spotify.com/show/4LqfhlyNcPLo1CmJXGJvEw Send a Message: Your Name | Email | Message Learn more by connecting with Tracy through Instagram, Facebook, LinkedIn, Pinterest, or visit adhdforsmartwomen.com.Are You Ready to Discover Your Brilliance? Order Now: https://adhdforsmartwomen.com/bookJoin Your ADHD Brain is A-OK: https://adhdforsmartwomen.com/aokVisit our website: https://adhdforsmartwomen.comJoin our community of ADHD For Smart Ass Women: https://www.facebook.com/groups/tracyotsuka Join What Do I Do With My Life Masterclass: spyhappy.me/classUnlock your best days with Blends: https://adhdforsmartwomen.com/blends