Classical Ehlers-Danlos Syndrome (cEDS)

Minimalist illustration of a young woman with pale pink bobbed hair working at an accessible office workstation with an ergonomic chair, footrest, raised laptop, wrist support, desk lamp, fan, water bottle, and cane. Coworkers sit at desks in the background.

Workplace Accommodations for Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a complex chronic condition that for many patients comes with some level of disability. It also often comes with other comorbidities (health conditions that occur alongside a primary diagnosis) such as dysautonomia or mast cell activation syndrome (MCAS). As there are 13 types of EDS and symptoms often manifest differently in […]

Minimalist graphite sketch of five towering stacks of administrative forms, folders, and clipped papers against a plain white background.

Beyond the Medical: Why Disability Is an Administrative Experience Too

For most of my life, other people told my story. As a teenager, I saw my story appear in newspaper articles, documentaries, and conference presentations, focused on my rare genetic condition, scientific discovery, and perseverance. The stories helped other families find answers and gave people hope, and I remain grateful for the community they created. […]

Minimalist illustration of a laptop displaying an online webinar, with a speaker, microphone, chat bubble, and three participant icons.

CPP Webinars Are Back! And Why We Need Them More Than Ever

Have you ever clicked on the webinar section of our Chronic Pain Partners website and looked through the archives of the presentations featured? In 2013, our founder, John Ferman, started this highly popular educational series with a clear mission to provide free access to emerging research interpreted by experienced physicians. Wow, did he succeed! Looking […]

Illustration of a woman with EDS lying on a gray exercise mat in a bright, neutral-toned home workout space. Wearing a striped crop top, gray shorts, knee-high white socks, and sneakers, she holds two dumbbells above her chest. Kinesiology tape is wrapped around one elbow, with potted plants, folded towels, and storage baskets in the background.

Strength Training with Hypermobility: The Goldilocks Principle

There’s a good chance you’ve heard how important “getting stronger” is for bendy people. And it’s true: bendy people have been shown to generate about 30% less muscular force (i.e. be 30% weaker) at baseline than their non-bendy counterparts. And yet, the bendy body relies even more heavily on muscular support than others, thanks to […]

Illustration of a uterus and ovaries overlaid on a grid of white tiles with a red squiggly line around it all, symbolizing the shift from viewing PCOS as an ovarian condition alone to recognizing PMOS as a complex multisystem endocrine and metabolic disorder.

A Name Long Overdue: PCOS Becomes PMOS, and What That Means for the hEDS Community

  There is exciting news for the recently reported 17% of hEDS patients and 14.7% of HSD patients who experience polycystic ovary syndrome, now renamed to polyendocrine metabolic ovarian syndrome.   On May 12th, 2026, a new article was published in The Lancet announcing the name change from polycystic ovary syndrome (PCOS) to polyendocrine metabolic […]

Cover of the Ehlers-Danlos National Foundation 2013 Learning Conference welcome brochure. The cover reads "2013 Learning Conference" and lists the Rhode Island Convention Center and The Omni Providence in Providence, Rhode Island, with conference dates of August 1–3. A nighttime photograph of the Providence skyline appears at the bottom of the cover.

Ten Years and a Time Capsule: What Changed, What Didn’t, and What’s Next

July is a busy month in the Ehlers-Danlos world. The EDS Society’s Annual Global Learning Conference takes place in Allen, Texas, on July 24-26. It will feature a great lineup of esteemed physician speakers, patient organizations, advocates, and presentations covering this year’s theme: “Exploring Comorbidities in EDS & HSD.” It is also the Ten-Year Celebration of the founding of the Ehlers-Danlos […]

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Disability Pride Month: The World Works Better With Us

  Every July, the disability community marks Disability Pride Month: an annual celebration tied to the signing of the Americans with Disabilities Act (ADA) on July 26, 1990. The ADA was a landmark civil rights law that prohibited discrimination against disabled people in employment, public accommodations, transportation, and government services. It was the result of […]

Collage with different portraits. Going clockwise: Professional headshot of Jeevan Mann smiling outdoors, wearing a navy blazer and light blue button-down shirt against a softly blurred background Headshot of Krista Brack smiling at the camera indoors, wearing glasses and a white top, with informational displays blurred in the backgroun Portrait of Jacqueline Teti wearing a blue jean dress with large brown curls, smiling against a green leafy background Portrait of Kaleena Deshawn outdoors wearing colorful braided hair and bold green makeup, smiling slightly while wearing a green Ehlers-Danlos Syndrome awareness T-shirt with awareness ribbon graphics and text about chronic illness experiences

Beyond the Myths: Four People Talk About the Reality of Living With EDS & HSD

We wanted to end EDS Awareness Month by spotlighting the lived experiences of four individuals with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). Through these perspectives, we aimed to tackle a few of the many myths surrounding these conditions. We also wanted to offer a glimpse into the reality of living with EDS/HSD, including […]