EDS Wellness

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501(c)(3) NonProfit Corp focused on Health Education • Conferences • EDS Advocacy & Coaching • Educat [email protected]

501(c)(3) NonProfit focused on Health Education • digital/print media & resources • Webinars • Podcasts • Conferences • EDS Advocacy & Coaching

Movement • Nutrition • Wellness

Publishing of print and digital educational resources & materials for those living with Ehlers-Danlos syndrome & other chronic, often invisible illnesses. Co-creator & event planner for Wellapalooza Integrative Health & Wellness Conferences

- the coolest integrative health conferences ever! www.wellapalooza.com

Moving Naturally with Hypermobility seminars - www.movingnaturallywithhypermobility.com

Owner of Invisible Strength anthology series (previously Our Stories of Strength) - sharing good news stories of strength, perseverance, and hope, from those living with chronic, often invisible illnesses.

Co-Author of Our Stories of Strength - Living with Ehlers-Danlos Syndrome - debut anthology in the Our Stories of Strength anthology series. www.invisiblestrength.co

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Questions?

11/10/2026

Never thought I’d see hEDS in the New York Times, let alone be quoted in it 🥹

Honestly, when I first started posting on here it felt kind of silly. I didn’t set out to be an influencer. I set out to share the science. And I’m still not sure I’d call myself an influencer.

But I can’t tell you how many of you have messaged me saying you finally found answers, or worked up the courage to ask your doctor about EDS and related conditions, because of something you saw here. Sometimes it was my own story, sometimes the research. Either way it mattered to someone, and so many of you are having the same impact sharing your stories too.

Stories like Del’s in this article are SO common. And so many people still don’t take it seriously, or blame patients for thinking they know more than their doctors when they find answers online. This doesn’t stop with hEDS. But having doctors and researchers back that journey up in the Times means a lot to me, and I hope it takes some of the stigma and fear out of walking into those appointments.

I told the Times: “People aren’t making up symptoms just because they saw a video. They’re actually finding words to describe things that have been wrong their whole life.”

Huge thank you to Elizabeth Anne Brown for writing this, to Dr. Francomano, Dr. Knight, and Dr. Bolognese for speaking up, and to Del Ivey for sharing her story. And if you’re still trying to get answers, please keep going.

📸 Hunter McRae for The New York Times

10/03/2026

While working at Sam Altman's OpenAI, Fidji Simo was struggling with her POTS diagnosis.

“Unfortunately, it’s very, very hard for me to stand without passing out. I can’t sit or stand so long—more than five or 10 minutes, I pass out, which is very inconvenient to say the least,” she said.

For the last year, Simo has been working on ways to use AI to attack chronic health conditions like her own. In March 2025, while still at OpenAI, she launched a startup called ChronicleBio with her partners. Their goal: To sort through the thicket of symptoms underlying chronic immune-related diseases.
Read more: https://www.forbes.com/sites/amyfeldman/2026/10/01/this-former-openai-exec-is-trying-to-cure-chronic-diseases-including-her-own/?utm_source=ForbesMainFacebook&utm_medium=social&utm_campaign=ForbesMainFB
📸: Joel Saget/AFP via Getty Images

09/21/2026

09/07/2026

For most of her life, Jacqueline Luciano, a nurse in Chicago, has experienced mysterious injuries and ailments including a long list of sprains and tears, dizziness and fatigue, and chronic headaches and pain.

As Luciano would discover, many of her health issues could be traced back to the fact that she is hypermobile, or double-jointed.

She joins an increasingly visible group of people, including the singer-songwriter Billie Eilish and author Rebecca Yarros, who are speaking out about their struggles with hypermobility.

Learn more about hypermobility and what the research says about its surprising health risks: https://on.natgeo.com/vmW8Zq

08/13/2026

“Once recognized, never overlooked.”

It’s the philosophy at The Center for Neuro-EDS and Craniospinal Disorders (home of world-renowned neurosurgeon, Dr. Paolo Bolognese). It’s a breakthrough acknowledgment that patients with connective tissue disorders often belong to a subgroup that suffers from complex neurological conditions, like , , , , , , , , , and more.

It is with gratitude that we congratulate Dr. Allison R. Bloom, Dr. Ilene S. Ruhoy, Dr. Randall A. Dass, Dr. Amanda Lerner, Dr. Paolo B. Bolognese, and Dr. Petra M. Klinge on the preprint release of their groundbreaking position paper, “Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders.”

Thousands of patients have received life-changing and life-saving interventions as these pioneers in medicine have learned (from the patients themselves) that connective tissue biology often gives rise to a collection of neurological, cranial, spinal, autonomic, neurovascular, and immune-inflammatory manifestations.

An estimated 10-30%+ of hypermobile patients may belong to a neuro-EDS phenotype. At last, there is a vocabulary and a growing consensus around how to recognize this suffering and offer validation, diagnostic clarity, and treatment. We encourage you to learn from this important article, to share it widely, and to become part of the conversation. If you see yourself in this article, we encourage you to show it to members of your medical team so they can, at last, see you too.

It is our ardent hope that this conversation and this work is just the beginning — that neuro-EDS patients, once recognized, will never again be overlooked.

POSTQUAM VISIBILE, NUMQUAM NEGLECTUM

https://www.preprints.org/manuscript/202608.0567

01/09/2026

10/01/2025

09/22/2025

06/16/2025

04/02/2025

For most of her life, Jacqueline Luciano, a nurse in Chicago, has experienced mysterious injuries and ailments, including a long list of sprains and tears, dizziness and fatigue, and chronic headaches and pain.

As Luciano would discover, many of her health issues could be traced back to the fact that she is hypermobile, or double-jointed. She joins an increasingly visible group of people, including the singer-songwriter Billie Eilish and author Rebecca Yarros, who are speaking out about their struggles with hypermobility.

Learn more about hypermobility and what the research says about its surprising health risks: https://on.natgeo.com/4j9Wwad

Address

5213 Fairgreene Way
Ijamsville, MD
21754

Website

https://edswellness.org/

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