Why are people with Ehlers-Danlos syndromes, POTS, and mast cell disorders so frequently misdiagnosed, or dismissed entirely? In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, for a wide-ranging conversation about why complex, multisystem conditions continue to fall through the cracks of modern medicine. Together, they explore how siloed healthcare systems, time-limited visits, and overreliance on “normal” labs and imaging contribute to years of delayed diagnosis and unnecessary suffering.

The discussion unpacks why patients are often labeled as anxious, functional, or “too complex,” how pattern recognition breaks down when symptoms span multiple systems, and why early diagnosis could prevent much of the downstream complexity clinicians later struggle to manage. Dr. Knight also explains how diagnostic frameworks like the EDS–POTS–MCAS triad can be helpful and where they risk oversimplifying reality.

This episode offers a candid look at the gaps in current diagnostic thinking and a more thoughtful, patient-centered approach to evaluating complex chronic illness, one that prioritizes listening, curiosity, and clinical humility.

Takeaways:

When diagnosis is delayed, complexity isn’t inevitable — it’s created.

“Normal” tests don’t mean normal lives. Pain, fatigue, and dysfunction can exist long before labs catch up.

Many patients aren’t anxious until they’re repeatedly dismissed. Mislabeling symptoms often becomes the real diagnosis delay.

Multisystem conditions don’t reveal themselves through checklists — they emerge through patterns clinicians are trained to overlook.

Sometimes the most powerful intervention isn’t a test or a treatment — it’s listening earlier, longer, and with curiosity.

Find the episode transcript here.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: [email protected]

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?

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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.

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Pelvic pain, bladder symptoms, and sexual health concerns are incredibly common in people with Ehlers-Danlos Syndromes, yet they’re often misunderstood, dismissed, or treated in isolation.

In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Rachel Rubin, a board-certified urologist and nationally recognized leader in sexual medicine, to unpack why connective tissue disorders, mast cell activation, dysautonomia, and hormonal shifts so often collide in the pelvis. Together, they explore why bladder symptoms can occur without infection, why pelvic floor therapy alone may not be enough, and how hormones influence tissue health, inflammation, and pain.

The conversation dives into underrecognized drivers of symptoms, like vestibular pain, nerve involvement, mast cell activity, and hormonal suppression from birth control, while also addressing why many patients are left searching for answers for years. Dr. Rubin explains why sexual health is inseparable from overall health and how multidisciplinary, patient-centered care can dramatically improve quality of life.

For anyone living with a connective tissue disorder who has been told “everything looks normal” despite ongoing pelvic or bladder symptoms, this episode offers clarity, validation, and a new framework for understanding what may actually be happening.

Takeaways:

Pelvic and bladder symptoms in EDS are rarely caused by just one issue, they often involve hormones, nerves, mast cells, and musculoskeletal factors together.

Pain with tampons, sex, or sitting is not normal, even if exams and tests appear normal.

Hormonal changes and suppression can significantly affect pelvic tissue health, contributing to pain and urinary symptoms.

Pelvic floor therapy helps many patients, but not all, especially when underlying tissue or hormonal issues go unaddressed.

Sexual health is a quality-of-life issue, not a luxury, and deserves serious medical attention in hypermobility care.

Find the episode transcript here.

Want more Dr. Rachel Rubin?

Instagram: @drrachelrubin

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Want to learn more about the UVA EDS Center?

For Appointments and Questions: [email protected]

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

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/⁠⁠.

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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: [email protected]

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?

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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!⁠⁠

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Mast Cell Activation Syndrome is one of the most misunderstood, and underrecognized, conditions in modern medicine. In this episode, Dr. Linda Bluestein is joined by Dr. Lawrence Afrin, one of the world’s leading experts on mast cell disease, to unpack why MCAS is so often missed, why tryptase alone is not enough to diagnose it, and how this condition may be driving chronic inflammation, neurologic symptoms, psychiatric symptoms, and even hypermobile Ehlers-Danlos Syndrome (hEDS) in some patients.

They talk about why MCAS can look completely different from one person to the next, how mast cells influence nearly every system in the body, and why so many patients are told “nothing is wrong” despite being profoundly unwell. We also explore emerging treatments, including GLP-1 medications, and what the future of MCAS research may hold.

If you or your patients live with complex, multisystem symptoms that don’t fit neatly into one diagnosis, this conversation may change how you see everything.

Takeaways:

MCAS rarely looks like classic allergy, which is why it’s so often overlooked.

Normal tryptase does not rule out mast cell disease, despite what many clinicians believe.

Chronic multisystem inflammation is the biggest red flag for MCAS.

MCAS may help explain hypermobile EDS in some patients, not as a genetic collagen defect but as an immune-driven process.

New therapies are discussed, offering real hope for improved quality of life.

Find the episode transcript here.

Want more Dr. Lawrence Afrin?

http://www.aimcenterpm.com

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Website: https://www.hypermobilitymd.com/

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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!⁠⁠

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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

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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/

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Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

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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!⁠⁠

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In this expansive and deeply affirming conversation, Linda Bluestein and Shimi Kang explore a powerful idea: true healing comes from connection, not control—especially when living with chronic pain, nervous system dysregulation, or complex, overlapping conditions.

They unpack the neuroscience of emotional regulation and why chronic pain so often disrupts attention, focus, and cognitive flexibility—issues frequently labeled as “brain fog” or misattributed solely to mood or motivation. The discussion also dives into the growing recognition of overlap between neurodivergence and Ehlers-Danlos Syndromes, exploring how sensory sensitivity, pain, autonomic stress, and dopamine dysregulation may be biologically intertwined.

The conversation examines how constant tech stimulation and dopamine overload can further impair resilience, focus, and emotional regulation, particularly in already taxed nervous systems. They also explore emerging research on psychedelic-assisted therapies, including how substances like psilocybin may help unlock stored trauma, shift pain pathways, and support nervous system recalibration.

From the culture of medicine to the lived experience of chronic illness, they name the often-unspoken role of shame in blocking connection, care, and recovery—inviting listeners to rethink how we relate to our bodies, our brains, and what it truly means to heal.

Takeaways:

How chronic pain and nervous system stress impair focus, attention, and executive function

The emerging connection between neurodivergence (e.g.; ADHD, autism, dyscalculia, dysgraphia etc.) and Ehlers-Danlos syndromes

Why dopamine overload—from phones, apps, and constant stimulation—can worsen pain and emotional regulation

How psychedelic-assisted therapies may help release stored trauma and alter pain pathways

Why unspoken shame in medicine and chronic illness interferes with healing and connection

Why whole-person healing requires honoring the brain–body–nervous system connection

Find the episode transcript here.

Want more Dr. Shimi Kang?

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Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

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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!⁠⁠

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What if your chronic pain, bloating, or fatigue wasn’t in your head, but in your blood vessels? In this episode, Dr. Linda Bluestein sits down with vascular surgeon Dr. Robert Hacker, who’s on the front lines of diagnosing and treating complex conditions like MALS (Median Arcuate Ligament Syndrome), Nutcracker Syndrome, May-Thurner Syndrome, and pelvic venous congestion syndrome, conditions that disproportionately affect women and often go undiagnosed for years.

Together, they dive into the frustrating diagnostic delays, the overlap between vascular compression and syndromes like POTS (Postural Orthostatic Tachycardia Syndrome) and EDS  (Ehlers-Danlos Syndrome), and how new surgical approaches are offering hope. Whether you're navigating chronic pelvic pain, unexplained GI symptoms, or fainting episodes, this conversation breaks down the misunderstood links between your veins, nerves, and connective tissue—and what to do about them.

Takeaways:

MALS isn’t rare, it’s rarely diagnosed. Dr. Hacker explains the symptoms and scans to look for when your gut symptoms don’t match the tests.

Why so many women are misdiagnosed with IBS or anxiety. Pelvic venous congestion, Nutcracker Syndrome, and May-Thurner often mimic more common conditions—but require totally different treatments.

The surprising connection between vascular compression and POTS. It’s not just nerves, your veins might be compressing in ways that worsen dysautonomia.

Surgery isn’t a silver bullet, but it can be life-changing. Dr. Hacker shares what makes a good surgical candidate and how his team helps patients navigate workup and recovery.

When your connective tissue works against your vascular system. Hypermobility and EDS can make vascular compression more likely and more complicated to treat.

Find the episode transcript here.

Want more Dr. Robert Hacker?

Instagram: https://www.instagram.com/stlvascular/

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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/⁠⁠.

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Part of the Human Content Podcast Network

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In this Office Hours episode, Dr. Linda Bluestein tackles some of the most challenging questions from our listeners and dive deep into the overlooked intersections of hypermobility, surgical complications, and neurodiversity. What happens when five rectal prolapse surgeries fail? Dr. Bluestein breaks down why so many surgical interventions fall short for people with hypermobile Ehlers-Danlos Syndrome (hEDS) and what you must consider before your next procedure, including essential imaging, anesthesia concerns, pelvic floor support, and mesh alternatives. Then, she explores a lesser-known but increasingly discussed connection: how vision dyspraxia and dyscalculia often go hand-in-hand with hypermobility, and why challenges with balance, motor planning, and even math might be far more physical than we think. Plus, you'll hear my own hypermobility hack for surviving the dreaded shampoo bowl at the salon. Whether you're navigating chronic pain, misunderstood learning challenges, or a body that just won’t follow the rules, this episode is packed with the nuanced insight you’ve been waiting for.

Takeaways:

Why rectal prolapse surgeries often fail in HEDS and the exact workup to request before considering another one.

The real risks of mesh, sutures, and tension-based surgical repair in connective tissue disorders.

How vision dyspraxia and convergence insufficiency can disrupt learning and quality of life and why they’re so common in EDS.

Dyscalculia explained: not just a math issue, but a brain-body mismatch often missed in neurodiverse bendy bodies.

Two hypermobility hacks worth stealing including a genius way to get your hair washed without neck pain.

Find the episode transcript here: https://www.bendybodiespodcast.com/rectal-prolapse-dyscalculia-dyspraxia-the-connective-tissue-connection-office-hours-ep-177/

Want more Dr. Linda Bluestein, MD?

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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: ⁠⁠⁠[email protected]⁠⁠⁠

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

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In this episode, Dr. Linda Bluestein sits down with Lara Bloom, President and CEO of The Ehlers-Danlos Society, for a revealing look behind the curtain of the Society’s ambitious global roadmap to 2026. What will it take to finally change the trajectory for people with EDS (Ehlers-Danlos Syndromes) and HSD (Hypermobility Spectrum Disorders)? Why have progress and awareness lagged for so long? And what is happening right now around the world that could shift everything?

Together, they unpack the systemic obstacles still tripping up patients, from years-long diagnostic delays and rampant misinformation to critical gaps in research, policy, and clinical education. Lara shares the driving force behind her vision for global change and the monumental international effort unfolding to move EDS and HSD into the spotlight they’ve long deserved.

If you’ve ever wondered why the system feels stuck, or what it might take to finally break through, this conversation offers rare insight and genuine hope.

Takeaways:

Lara reveals why global alignment across policy, education, and clinical care could be the missing key to major breakthroughs for EDS and HSD.

The episode exposes the hidden consequences of misdiagnosis and why early recognition, especially in children, may be more urgent than most clinicians realize.

Linda and Lara dig into how outdated terminology and dismissive provider attitudes continue to shape patient experiences in ways few talk about openly.

Lara shares how her personal journey fuels her global leadership and why patient voices are becoming impossible to ignore in research, advocacy, and policy.

The international symposium and roadmap point toward real momentum, but lasting change will require unprecedented collaboration across borders and specialties.

Find Episode Transcript here: https://www.bendybodiespodcast.com/the-roadmap-that-could-change-eds-forever-with-lara-bloom-ep-176/

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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.

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In this info-packed episode, Dr. Linda Bluestein sits down with cardiologist Dr. Alexis Cutchins, an expert in pelvic venous disease (PVD) and POTS (postural orthostatic tachycardia syndrome), to tackle one of the most misunderstood vascular conditions in complex patients. From treatment options and expected outcomes to what really happens after embolization procedures, they unpack the physiology and the myths. Plus, they dive into GLP-1 medications like semaglutide and tirzepatide, long COVID symptom overlaps, heat intolerance, and why certain movement strategies backfire for patients with hypermobility, POTS, and other connective tissue conditions. They also trade tips on hydration, travel, pelvic support, and how to build movement back into your life, even when your nervous system fights you at every step.

Takeaways:

Dr. Cutchins explains how PVD impacts the whole body, causing fatigue, pelvic pain, and even mimicking other disorders.

Weight loss drugs like semaglutide and tirzepatide can help, but only in the context of a larger strategy that considers joint instability, hormonal shifts, and gut function.

They discuss how patients with PVD or dysautonomia are especially sensitive to warm environments and what that teaches us about blood flow and pressure regulation.

From favorite exercises to subtle red flags, they explore how to reintroduce movement without triggering crashes or setbacks.

Compression, salt loading, movement timing, and cooling tools can turn a nightmare trip into a manageable one.

Want more Dr. Alexis Cutchins?

Find the episode transcript here.

https://www.instagram.com/drcutchins/

https://youtube.com/@DrCutchins?si=pNvR2A6eFOL4vS9m

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

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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: ⁠⁠⁠[email protected]⁠⁠⁠

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