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99. From News Anchor to Advocate: A POTS and EDS Journey with Summer Dashe
57:58

99. From News Anchor to Advocate: A POTS and EDS Journey with Summer Dashe

Summer Dashe, a former news anchor and advocate for the chronically ill, shares her POTS and EDS journey. She covers how she manages her symptoms in everyday life and the challenges of getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome). #dysautonomia #ChronicIllness #POTSAwareness Takeaways Getting a POTS diagnosis can be challenging, and it often takes multiple visits to different doctors before receiving a proper diagnosis. Awareness about POTS among doctors has improved over the years, but there is still a need for more education and understanding. Finding supportive coworkers and a job that accommodates your symptoms is crucial for managing a chronic illness in the workplace. Open and honest communication is key when asking for accommodations, and providing informed reasoning behind the request can help employers understand the need. Remote work has opened up opportunities for individuals with chronic illnesses, allowing them to work in a way that suits their symptoms and abilities. Managing the unpredictability of POTS requires self-compassion and finding strategies that work for you, even if it may not always feel graceful. Know your limits and make decisions based on your boundaries to remain reliable in work and personal life. Accepting a lifelong condition can be challenging, but it allows for a more realistic approach to treatment. Genetic research and advancements in technology provide hope for future awareness, treatment, and potentially a cure. It's important to be honest and transparent about the realities of chronic illnesses to better prepare patients for their journey. Technology played a crucial role in Summer's car accident, with her Apple Watch automatically calling 911 and alerting her emergency contacts. The support and care from family, friends, and coworkers were instrumental in helping Summer through the aftermath of the accident. Summer's experience highlights the importance of valuing oneself and advocating for accommodations in the workplace and she shares her favorite hypermobility hack. Chapters ➡ 00:00 Introduction and Background 08:01 Supportive Coworkers and Accommodations 16:01 Benefits of Remote Work 32:09 The Impact of Ehlers-Danlos Syndrome on Treatment Approach 42:25 Hope for the Future: Advances in Awareness, Treatment, and Cure 49:39 The Role of Technology in a Car Accident 56:11 The Support System: Family, Friends, and Coworkers 01:06:31 Valuing Oneself and Advocating in the Workplace 📺 Other Helpful Videos For You 97. Learning to Spot the Signs of Ehlers-Danlos Syndromes with Guest Host, Kate Colbert: https://youtu.be/Ebm0R8dvkD8?si=q7f1Sb1VqeFM43_k 95. Pain Care Redefined: Non-Drug Therapies for Pain Relief with Heather Tick, MD: https://youtu.be/Fu3mzL2rg4U?si=7D6FiQbn1W80erTG 86. The Unfair EDS Journey with Amanda Cassil, PhD: https://youtu.be/_KiZf5100p4?si=9dk9yuA_xDtVyDKW Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. 🎧 Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority! 🧬🔬🦓 Resources: Learn more about Summer Dashe https://www.summerdashe.com/ #SummerDashe #dysautonomia #ChronicIllness #POTsie #POTSAwareness #ZebraWarriors #ZebraStrong #POTS #EhlersDanlos #Podcast #BendyBodiesPodcast #BendyBuddy #HypermobilityMD --- Keep up to date: Subscribe to on YouTube: https://www.youtube.com/@bendybodiespodcast Follow me on Twitter - https://twitter.com/BluesteinLinda Follow me on LinkedIn: https://www.linkedin.com/in/hypermobilitymd/ Like my Facebook page: https://www.facebook.com/BendyBodiesPodcast Read my blog - https://www.hypermobilitymd.com/blog --- ⭐⭐⭐ About Bendy Bodies Podcast ⭐⭐⭐ Are you affectionately known as 'Gumby' among your friends and family? Being 'double-jointed' isn't just a quirky trait—it can lead to a host of problems throughout the body, even if you were once 'bendy' but aren't anymore. Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), often go unrecognized by doctors, causing life-altering symptoms such as pain, frequent injuries, joints 'giving way,' fatigue, gastrointestinal issues, and insomnia. Welcome to the Bendy Bodies podcast, hosted by EDS expert, Dr. Linda Bluestein, MD. Join us as we delve into topics relevant to anyone experiencing symptomatic joint hypermobility. From insightful discussions with specialists boasting diverse expertise to practical tips for optimizing your hypermobile health, we're here to empower you on your journey to wellness.
98. Environmental Triggers of Mast Cell Disease with Tania Dempsey, MD
01:14:50

98. Environmental Triggers of Mast Cell Disease with Tania Dempsey, MD

Dr. Tania Dempsey discusses mast cell activation syndrome (MCAS) with a focus on environmental triggers of mast cell disease. #MCAS #MastCell #MastCellDisease Chapters ➡ 00:00 Introduction to MCAS and Dr. Tanya Dempsey 02:28 Infections and MCAS 14:31 Immune Deficiency and Infections 28:37 Environmental Triggers 37:00 Air Purification and Food Quality 42:01 Quality of Meat vs. Pesticide-Free Vegetables 43:11 Fish as an Alternative to Meat 44:32 Toxins in Fish and Mercury Levels 46:02 Detoxing Mercury and Sushi Concerns 47:08 Reactions to Sushi and Scombroid Food Poisoning 48:43 Sensitivity to Scents and Environmental Triggers 49:30 Long-Term Antihistamine Use and Dementia 52:21 Reactions to Laundry and Facial Products 56:23 Treatment Options after Failing Xolair 57:12 Food Dyes and MCAS 58:18 EMFs and MCAS 59:22 Why Some Doctors Fail to Believe in MCAS 01:03:41 Immunotherapy for Allergies and MCAS 01:04:56 Managing Heat, Sun, and Exercise Triggers 01:09:54 Diagnosing MCAS and Lab Testing Challenges 01:11:20 Final Thoughts and Finding Answers Takeaways Infections can trigger mast cell reactions and people with MCAS may react differently than those without. Identifying and addressing environmental triggers, such as mold and plastics, is important in managing MCAS. Immunotherapy for allergies and asthma may impact MCAS symptoms. Treatment options like Xolair (Omalizumab), ketotifen, cromolyn, and low dose naltrexone (LDN) are discussed. Nutrition, particularly protein intake, affects MCAS symptoms. Fish can be a good source of protein, but be aware of mercury levels and choose smaller fish. Testing mercury levels can help identify potential toxicity and guide treatment. Antihistamines can be beneficial for managing MCAS symptoms and should not be feared. Individuals with MCAS may have sensitivities to environmental triggers. 📺 Other Helpful Videos For You https://youtu.be/Ebm0R8dvkD8?si=Um_wbmwWeY9AxRSU https://youtu.be/1FAgtedsV9I?si=hMr3PFoDgjHo7cLs https://youtu.be/cByF_gia6bE?si=fvDUt6NAawbh6r1d Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.🎧 Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com. YOUR bendy body is our highest priority! 🧬🔬🦓 #EDSAwarenessMonth #HSDAwarenessMonth #Podcast #BendyBodiesPodcast #BendyBuddy #BendyBodies #HypermobilityMD Learn about Dr. Tania Dempsey, MD: Website: www.drtaniadempsey.com Mast Cell Matters Podcast: https://podcasts.apple.com/us/podcast/mast-cell-matters-deep-dives-on-mcas-with-tania/id1717106678 Article: Learned Cautions Regarding Antibody Testing in MCAS https://pubmed.ncbi.nlm.nih.gov/37566881/ Article: Diagnosis of mast cell activation syndrome: a global "consensus-2 https://pubmed.ncbi.nlm.nih.gov/32324159/ - Keep up to date: YouTube: https://www.youtube.com/@bendybodiespodcast X / Twitter: https://twitter.com/BluesteinLinda LinkedIn: https://www.linkedin.com/in/hypermobilitymd/ Facebook: https://www.facebook.com/BendyBodiesPodcast Shop my Amazon store: https://www.amazon.com/shop/hypermobilitymd - ⭐⭐⭐ About Bendy Bodies Podcast ⭐⭐⭐ Are you affectionately known as “Gumby” among your friends and family? Being “double-jointed” isn't just a quirky trait—it can lead to a host of problems throughout the body, even if you were once “bendy” but aren't anymore. Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), often go unrecognized by doctors, causing life-altering symptoms such as pain, frequent injuries, joints “giving way,” fatigue, gastrointestinal issues, and insomnia. Welcome to the Bendy Bodies Podcast, hosted by EDS expert, Dr. Linda Bluestein, a board-certified MD with expertise in anesthesiology and the clinical management of pain in patients with hypermobility disorders. Join us as we delve into topics relevant to anyone experiencing symptomatic joint hypermobility. From insightful discussions with specialists boasting diverse expertise to practical tips for optimizing your hypermobile health, we're here to empower you on your journey to wellness. FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. Disclaimer: This video is not intended to provide diagnosis, treatment or medical advice. Content provided on this Youtube channel is for informational purposes only. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options. Information on this Youtube channel should not be considered as a substitute for advice from a healthcare professional. The statements made about specific products throughout this video are not to diagnose, treat, cure or prevent disease.
97. Learning to Spot the Signs of Ehlers-Danlos Syndromes with Guest Host, Kate Colbert
01:04:28

97. Learning to Spot the Signs of Ehlers-Danlos Syndromes with Guest Host, Kate Colbert

In this special “EDS Awareness Month” episode of the Bendy Bodies Podcast, founder Dr. Linda Bluestein and guest host Kate Colbert discuss how everyone can learn to spot the signs of Ehlers-Danlos Syndromes. #EDSAwarenessMonth #EDSAwareness #EhlersDanlosSyndrome Takeaways EDS Awareness Month is an opportunity to educate and spread awareness about Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and associated conditions. Healthcare professionals should listen to their patients and believe them, even if a clear diagnosis is not yet established. Teachers, daycare providers, and nannies can play a crucial role in identifying hypermobility conditions in children. Coaches and athletic instructors should be aware of the signs of EDS in athletes and dancers and provide resources for further evaluation and support. Several myths about EDS, such as the misconception that EDS does not cause pain and that only geneticists can diagnose it, should be debunked. Early intervention and appropriate treatment are crucial for better patient outcomes. Mast Cell Activation Syndrome (MCAS) is an important condition to consider in individuals with environmental sensitivities, even if their tryptase levels are not elevated. Understanding and empathy are crucial in relationships where a partner has EDS or HSD, as the condition can cause dynamic disability and varying needs. Communication is key in relationships, and using mirroring techniques and talking boundaries can help improve understanding and compassion. Employers and coworkers should show support and offer accommodations to individuals with EDS, such as checking in with them, providing grace, and making the workplace more accessible. Increasing awareness about EDS and related conditions is essential to foster empathy, support, and better partnerships in healthcare, workplaces, and society. 📺 Other Helpful Videos For You 86. The Unfair EDS Journey with Amanda Cassil, PhD: https://youtu.be/_KiZf5100p4?si=eyOyNazMZ5t1pxE5 82. The Impact of Clinician-Associated Trauma on EDS and HSD with Colin Halverson, PhD: https://youtu.be/GSAKJRx0BgY?si=vrPX9-fPnMht-GBo 95. Pain Care Redefined: Non-Drug Therapies for Pain Relief with Heather Tick, MD: https://youtu.be/Fu3mzL2rg4U?si=t9SQMRGWQgxPjb9T Chapters ➡ 00:00 Introduction and EDS Awareness Month 09:30 Identifying Hypermobility Conditions in Children 31:06 Early Intervention and Appropriate Treatment 42:04 Supporting Individuals with EDS in the Workplace 54:59 The Importance of Awareness and Empathy for EDS and Related Conditions Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.🎧 Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority! 🧬🔬🦓 #EDSAwarenessMonth #EDSAwareness #EhlersDanlosMyths #HSD #MCAS #BendyBodies #HSDAwarenessMonth #EhlersDanlos #ehlersdanlosawareness #Hypermobility #Podcast #BendyBodiesPodcast #BendyBuddy #HypermobilityMD --- Keep up to date: Subscribe to on YouTube: https://www.youtube.com/@bendybodiespodcast Follow me on Twitter - https://twitter.com/BluesteinLinda Follow me on LinkedIn: https://www.linkedin.com/in/hypermobilitymd/ Like my Facebook page: https://www.facebook.com/BendyBodiesPodcast Read my blog - https://www.hypermobilitymd.com/blog --- ⭐⭐⭐ About Bendy Bodies Podcast ⭐⭐⭐ Are you affectionately known as “Gumby” among your friends and family? Being “double-jointed” isn't just a quirky trait—it can lead to a host of problems throughout the body, even if you were once “bendy” but aren't anymore. Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), often go unrecognized by doctors, causing life-altering symptoms such as pain, frequent injuries, joints “giving way,” fatigue, gastrointestinal issues, and insomnia. Welcome to the Bendy Bodies Podcast, hosted by EDS expert, Dr. Linda Bluestein, a board-certified MD with expertise in anesthesiology and the clinical management of pain in patients with hypermobility disorders. Join us as we delve into topics relevant to anyone experiencing symptomatic joint hypermobility. From insightful discussions with specialists boasting diverse expertise to practical tips for optimizing your hypermobile health, we're here to empower you on your journey to wellness.
Ep. 96 is out now! Take a sneak peak 🤫
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96 Coping w/ Dance Injuries and Career Transitions w/ Chelsea Pierotti, PhD & Cohost Jennifer Milner
42:00

96 Coping w/ Dance Injuries and Career Transitions w/ Chelsea Pierotti, PhD & Cohost Jennifer Milner

In this Bendy Bodies podcast episode, Dr. Chelsea Pierotti discusses coping w/ dance injuries and career transitions, both from a physical and psychological perspective. #Dancers #MentalSkills #DanceLife Takeaways The way dancers appraise their injuries and their emotional response to them can greatly impact their coping mechanisms. Shifting the mindset from seeing an injury as a disaster to viewing it as a challenge can help dancers overcome the emotional and psychological challenges of injury. Social support plays a crucial role in the recovery process for dancers. Dancers should define success in ways that are within their control, rather than relying solely on external validation. Transitions between different forms of dance or giving up dancing altogether can be challenging, and it's important for dancers to have a strong sense of identity beyond being a dancer. Consider your values and what truly matters to you in life when transitioning out of dance. Reflect on who you admire and what you admire about them to identify your own values. Acknowledge and process the grief and loss that comes with leaving a dance career. The dance world can be more supportive by adopting a positive coaching approach and focusing on the whole athlete. Developing mental skills and self-awareness is crucial for dancers and beneficial for everyone. 📺 Other Helpful Videos For You 93. Unveiling Taming the Zebra:A Discussion w/ Physical Therapists Patricia Stott and Heather Purdin: https://youtu.be/IUrTbhDHyMU?si=tRsOfGaoQOUpch_F 85 Making a MCAS Documentary w Drs. Weinstock, Dempsey, Bluestein, Afrin, Kinsella & Jill Brook, MA: https://youtu.be/1FAgtedsV9I?si=0Yjpv_r90M2X9skg 87. Disordered Eating in Dance with Josh Spell, LICSW, and Guest Co-Host Jennifer Milner: https://youtu.be/3-Uq3_2564M?si=oqFxJYQpLjFxnEXC Chapters ➡ 00:00 Introduction 00:54 Introducing Dr. Chelsea Pierotti 01:13 Coping with Injuries 03:38 Coping Mechanisms 06:34 The Influence of Childhood Experiences 08:29 Developing Resilience 09:48 Transitioning from Dance 12:11 The Role of Pain 13:09 Challenges Faced by Hypermobile Dancers 13:23 Supporting Dancers through Challenges 17:49 The Importance of Social Support 18:43 Grief and Loss of a Dance Career 20:34 Developing Resilience and Coping Strategies 24:57 The Importance of Values 27:52 Shifting the Dance Culture 29:25 Coping with Career Shifts 33:22 Positive Coaching Approach 35:55 Developing Mental Skills 36:51 Applying Mental Skills to Life 37:24 The Importance of Self-Awareness in Dance 38:25 Mindset: Controlling the Controllables Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.🎧 Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority! 🧬🔬🦓 #Dancers #Dance #Injuries #Transitions #Grief #MentalSkills #BendyBodies #DanceLife #BalletLife #injury #zebrastrong #dancer #Hypermobility #Podcast #BendyBodiesPodcast #BendyBuddy #HypermobilityMD --- Keep up to date: Subscribe to on YouTube: https://www.youtube.com/@bendybodiespodcast Follow me on Twitter - https://twitter.com/BluesteinLinda Follow me on LinkedIn: https://www.linkedin.com/in/hypermobilitymd/ Like my Facebook page: https://www.facebook.com/BendyBodiesPodcast Read my blog - https://www.hypermobilitymd.com/blog --- ⭐⭐⭐ About Bendy Bodies Podcast ⭐⭐⭐ Are you affectionately known as 'Gumby' among your friends and family? Being 'double-jointed' isn't just a quirky trait—it can lead to a host of problems throughout the body, even if you were once 'bendy' but aren't anymore. Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), often go unrecognized by doctors, causing life-altering symptoms such as pain, frequent injuries, joints 'giving way,' fatigue, gastrointestinal issues, and insomnia. Welcome to the Bendy Bodies podcast, hosted by EDS expert, Dr. Linda Bluestein, MD. Join us as we delve into topics relevant to anyone experiencing symptomatic joint hypermobility. From insightful discussions with specialists boasting diverse expertise to practical tips for optimizing your hypermobile health, we're here to empower you on your journey to wellness.
What are your physical therapy experiences?
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Struggling with deconditioning? #Shorts
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Do you have brain fog? #shorts
00:49

Videos:

Publications:

Why do I hurt? Gaining a better grasp on hypermobility and Ehlers-Danlos Syndrome

Author: Jackie Duda

MDs With Chronic Illness Live in a Different Medical World

Author: Sarah Yahr Tucker

 

Does Hypermobility Make You More Prone to Sports Injuries?

Author: Beth Krietsch

 

Hope for Hypermobility: Part 2-An Integrative Approach to Treating Symptomatic Joint Hypermobility

Author: Victoria Daylor, BFA, Cortney Gensemer, PhD, Russell Norris, PhD, and Linda Bluestein, MD.

 

Hope for Hypermobility: Part 1-An Integrative Approach to

Treating Symptomatic Joint Hypermobility

Author: Victoria Daylor, BFA, Cortney Gensemer, PhD, Russell Norris, PhD, and Linda Bluestein, MD.

 

Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention?

Author: Sarah Lazarus

My daughter and COVID: a tale of 3 doctors

Author: Laura Fernando and Linda Bluestein, MD  

 

What a lifetime of gaslighting by other doctors feels like

Author: Sarah Cohen, MD and Linda Bluestein, MD  

The journey to diagnosing a mysterious illness

Author: Linda Bluestein, MD and Lauren Vasko

 

Besides Being Bendy, Hypermobile Dancers May Experience These Surprising Symptoms

Author: Linda Bluestein, MD

The difficult to diagnose comorbidity that plagues Ehlers-Danlos syndrome patients 

Author: Linda Bluestein, MD and Julie Griffis, PT

Inflammation in the Dancer

Author: Linda Bluestein

The Dancer's Planning Guide to Optimizing Immunity During COVID-19 and Beyond 

Author: Linda S. Bluestein

Diagnosis of mast cell activation syndrome: a global “consensus-2” 

Authors:  Lawrence B. Afrin, Mary B. Ackerley, Linda S. Bluestein et al

"Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders"

Editor: Diana Jovin, Contributors: Paldeep Atwal, M.D., Richard Barnum, M.D., Linda Bluestein, M.D. et al

 

Pain Management in Patients with Hypermobility Disorders

Author: Linda Bluestein 

Perioperative Care in Patients with Ehlers Danlos Syndromes

Authors: Pradeep Chopra and Linda Bluestein 

Understanding Hypermobility in Dancers

Author: Linda Bluestein for Healthy Dancer Canada

Anesthesia and Surgery Safety Card

Created by Linda Bluestein 


 

Podcasts:

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Bendy Bodies with the Hypermobility MD
Podcast

Founder and Host,

Dr. Linda Bluestein, MD

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Hypermobility Problems with Anesthesiologist Dr. Linda Bluestein

Knock Knock, Hi! with the Glaucomfleckens Podcast

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Hypermobility: Separating Fact From Fiction with Dr. Linda Bluestein

Acrobatic Arts Podcast

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Ehlers-Danlos Syndrome and Beyond - Health Connections You Need to Know with Dr. Linda Bluestein

Becoming Immune Confident Podcast

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Holistic Approaches to Navigating Ehlers-Danlos Syndrome, POTS, and MCAS

Modern Pain Podcast

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Pain and Hypermobility with Dr. Linda Bluestein - Mast Cell Matters Series

The POTSCAST

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Hypermobility Disorders: The Power of Proactivity with Linda Bluestein, MD

Acrobatic Arts Podcast

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Treatment Room Secrets #19 - Dr. Linda Bluesteim M.D. - Hypermobility

Treatment Room Secrets Podcast

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Case #05: Kyle
With Dr. Linda Bluestein

Symptomatic: A Medical Mystery Podcast

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Hypermobility Spectrum Disorders with Dr. Linda Bluestein

Redefining Yoga

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If you can't connect the issues, think connective tissues 

The Podcast by Kevin MD

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The Link Between Hypermobility Spectrum Disorders, Hypermobile-EDS, MCAS, and Endometriosis with Dr Linda Bluestein

This EndoLife

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003- Dr. Linda Bluestein M.D.-Hypermobility, Ehlers Danlos Syndrome, and Why You Are Stronger Than You Believe.

 Whealth Podcast

Schedule an Event
with the Hypermobility M.D.

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