EDS Wellness

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

01/17/2025

Are you double jointed? Your go-to party trick might amuse and entertain, but it could be a lot worse for your health than we thought.

People who are hypermobile, the proper name for being double-jointed, are able to extend their joints past the normal range of motion. It presents differently for different people, but it’s often a sign that your joints’ connective tissue is weak—leaving one vulnerable to wide range of issues such as chronic pain, gastrointestinal disorders, and even long COVID or POTS.

Learn more about the health risks presented by hypermobility at: https://on.natgeo.com/4agPEEQ