The Ehlers-Danlos Society

29/10/2026

We're thrilled to announce that RosannaTXT will be joining The Ehlers-Danlos Society for a special Meet & Greet at TwitchCon San Diego!

A Twitch Ambassador, YouTube Partner, and passionate charity fundraiser, Rosanna is also a member of the EDS and HSD community, having been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in 2023.

After years of searching for answers, Rosanna knows firsthand how life-changing a diagnosis can be. She's turned her own experience into a mission to raise awareness, support others, and make a difference through her incredible creator community.

Come meet Rosanna on Saturday, November 14, 1:00–2:00 PM PST! We'll be at booth #2247 in the Charity Zone of the San Diego Convention Center.

If you're inspired to make a difference, you don't need a huge following or even a livestream to get involved! Whether you're a gamer, artist, streamer, or content creator, you can use your creativity to support people living with EDS and HSD through Stream for Change!

Start your own fundraiser: https://streamforchange.funraise.org/

Meet Rosanna online: https://www.twitch.tv/rosannatxt

We can't wait to see you at TwitchCon! 💜

28/10/2026

For , Isabella shares why understanding the differences between Ehlers-Danlos syndrome (EDS) types is so important.

“I have had providers hear ‘EDS’ and immediately assume I am talking about hEDS or primarily about hypermobility. There can absolutely be overlapping symptoms, but vEDS comes with its own risks and medical considerations, particularly because of vascular and organ fragility.”

Isabella was initially told she had a different type of EDS before genetic testing showed she had vascular Ehlers-Danlos syndrome (vEDS).

“Receiving the correct diagnosis changed the way my health and medical care had to be approached.”

She hopes more healthcare professionals will recognize when vEDS requires specific medical considerations and know when to seek additional expertise.

“I do not expect every physician to be a vEDS specialist, especially because it is rare, but I do wish more providers knew enough to recognize when vEDS changes the situation and were willing to consult someone with more experience when they are unsure.”

❤️ This vEDS Action Month, we're sharing the voices of people living with vEDS and highlighting the importance of accurate diagnosis, greater healthcare professional awareness, and knowledgeable, coordinated care.

🔗 Read Isabella’s hopes for better care: https://www.ehlers-danlos.com/veds-action-month-isabella/

What do you wish healthcare providers understood about vEDS?

26/10/2026

So you’ve been telling your doctors you have classical Ehlers-Danlos syndrome (cEDS) based on a variant of uncertain significance (VUS) for over a year. Your GI issues, POTS, and MCAS have been sidelined because research and medical advice are focusing on wounds, scarring, and organs. ⁠
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Meanwhile, someone with a confirmed pathogenic variant is being lumped in with a much more broad and blurry group of "cEDS" — and the research is getting muddier because of it. This video is about the compounding harms of an unconfirmed diagnosis: to you, to the broader community, to relatives, and to the patients for whom getting this right is critical.⁠
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Follow along with Cortney Gensemer, PhD, Izzy Kornblau, , and The Ehlers-Danlos Society for the full series!⁠
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25/10/2026

"At 19 years old, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), and at 21, I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). I never expected either diagnosis, and both have changed my life in ways I never could have imagined. Since then, I have had to change the way I live my everyday life and learn to work around what my body will and will not allow me to do.

POTS affects me every day. I deal with severe dizziness and lightheadedness, weakness, fatigue, rapid changes in my heart rate, difficulty standing for long periods of time, and problems regulating my body temperature. Things that seem simple to most people can take a lot of energy for me. Even walking for a short period of time or standing for too long can cause my heart rate to rise dramatically and leave me feeling weak, dizzy, and exhausted. My symptoms are unpredictable, and some days are much harder than others.

hEDS has added even more challenges. I experience frequent joint instability and dislocations, along with pain when I move. Everyday movements can sometimes cause pain or make my joints feel unstable. I also experience neurological and sensory symptoms, especially during flare-ups. There have been times when I have lost a significant amount of sensation and function on the left side of my body. During these episodes, my vision and hearing can also become much worse, making it difficult to understand what is happening around me or function on my own.

I want to use my experience to spread awareness about POTS and hEDS. These conditions are often misunderstood or overlooked, especially because they are not always visible from the outside."

Read Kristen's story: https://www.ehlers-danlos.com/story/kristen-k/

25/10/2026

Dr. Clair Francomano discusses some lifestyle changes that may help in managing symptoms of POTS (postural orthostatic tachycardia syndrome).

What lifestyle adaptations have you found helpful in managing your POTS?

Struggling with POTS or dysautonomia symptoms? These 5 daily habits...

25/10/2026

October 25 is Postural Orthostatic Tachycardia Syndrome (POTS) Awareness Day.⁠ ⁠

POTS is an abnormal increase in heart rate when standing without a drop in blood pressure.

POTS is diagnosed when a person has all of the following:

1. Frequent symptoms that get worse when standing (including lightheadedness, palpitations, tremor, generalized weakness, blurred vision, exercise intolerance, and fatigue)

2. An increase in heart rate of ≥ 30 beats per minute when moving from lying down to standing (or an increase of ≥ 40 beats per minute in people 12 to 19 years old)

3. Absence of orthostatic hypotension (meaning there is not a > 20 mm Hg drop in systolic blood pressure when moving from lying down to standing)

If you have POTS, how do you describe how it impacts you to others?

Learn more about POTS, diagnosis, and management strategies, and find video resources here: https://www.ehlers-danlos.com/dysautonomia/

Reduce POTS Symptoms - Doctor Clair Explains: https://youtu.be/c_cUdS5NtKU?si=-6X48kgJFvD2iMnJ

Tips & Tricks for Management with Emily Rich, PhD., OTR/L https://youtu.be/LTKTq-srCHU?si=-bRdYhNftLZ77idQ

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24/10/2026

🎮💜 We're going to TwitchCon 2026!

We're excited to be joining the Charity Zone at TwitchCon San Diego as part of Stream for Change, bringing together creators, gamers, and communities who want to make a difference for people living with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

Through Stream for Change, creators can use their platforms to raise awareness, bring people together, and fundraise to support progress in research, education, and care.

Every stream has the power to reach someone new, start a conversation, and help build the healthcare system people with EDS and HSD deserve.

Are you attending TwitchCon? Come and say hello to Danielle and Randi from our Development Team! We'd love to meet you, hear about your streams, and share how you can get involved with Stream for Change.

📍 TwitchCon San Diego Convention Center | Charity Zone, Booth #2247
📅 November 13–15, 2026
🔗https://www.twitchcon.com/

23/10/2026

❤️ Advocating for your family shouldn't mean fighting to be heard.

Lauren's family is affected by vascular Ehlers-Danlos syndrome (vEDS). Through their experiences navigating healthcare, she's learned just how important it is for healthcare professionals to understand the specific diagnosis and the risks associated with it.

For Lauren, advocating for her family has meant researching medical information, bringing resources to appointments, explaining important precautions, and speaking up when concerns weren't taken seriously.

“Advocating firmly does not mean being difficult—it means making sure important information is considered when decisions are being made about my family's care.”

Lauren knows that telling a healthcare professional someone has EDS isn't enough. Knowing it's vEDS really matters. The vascular and tissue fragility associated with vEDS can affect how symptoms are assessed, how emergencies are managed, and what precautions may be needed for procedures and surgeries.

She wants healthcare professionals to understand these risks, consider recommendations from specialists familiar with the family's medical history, and listen when patients and families raise concerns.

This vEDS Action Month, Lauren's experience reminds us why greater understanding of vEDS, informed healthcare, and listening to patients and families are so important.

Families shouldn't have to fight to make sure their diagnosis is understood and their concerns are taken seriously.

https://www.ehlers-danlos.com/veds/

22/10/2026

📣Free, virtual EDS and HSD event | November 12

The 2026 Penn State Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Conference, themed 'Between the Stripes: Understanding the Comorbidities', will bring together individuals living with a type of EDS or HSD, caregivers, healthcare professionals, researchers, and advocates to examine the complex health conditions that can occur alongside these connective tissue disorders.

Through patient-centered education and multidisciplinary discussion, the free, virtual conference on November 12 will help participants better understand how concerns involving the autonomic nervous system, digestive system, pain, fatigue, mast cell activity, neurological health, sleep, and emotional well-being may overlap and influence a person’s overall health.

Ultimately, the conference is about connecting the dots. It will encourage patients and providers to look beyond individual symptoms, strengthen communication across medical specialties, and promote more coordinated, compassionate, and individualized approaches to EDS and HSD care.

Register today at https://www.eventbrite.com/e/2026-ehlers-danlos-hypermobile-spectrum-disorder-research-conference-tickets-1993710354339

22/10/2026

It's Dysautonomia Awareness Month - Meet our sponsors Supacore Performance! ⁠
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"Supacore’s Coretech® leggings bring graduated leg compression and targeted abdominal, pelvic and lower-back support together in one garment. ⁠
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Choosing compression is about more than the areas it covers, it also needs to work within your daily routine. ⁠
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An appointment across town. A morning at work. Time spent preparing a meal. ⁠
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For someone living with hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorders (HSD) and POTS or orthostatic intolerance, these moments can involve decisions about energy, symptoms and support ⁠before the day has even begun. ⁠
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If compression is part of your clinician’s recommendations, start with three questions: ⁠

Where do I need support? ⁠
Discuss whether lower-leg, thigh or abdominal coverage is appropriate for you. Supacore’s Coretech® leggings combine leg compression with support around the core, offering an option that extends beyond the lower legs. ⁠
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What fit and pressure are right for me? ⁠
Use the garment’s measurement guide rather than assuming your usual clothing size will fit. Check that the product’s stated compression specifications match your clinician’s advice. Tighter is not automatically better. ⁠
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How will this fit into my routine? ⁠
Consider dressing, sitting, bathroom visits and the clothing you normally wear. If putting on compression is difficult, ask about suitable techniques or dressing aids. Those practical details matter when choosing something you may use regularly. ⁠
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This October, Supacore is highlighting compression as one possible part of a personalised support plan. Find your Supacore fit and explore leg and core support → https://supacore.com/

Use code EDS20 for 20% off."