Articles

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 […]

Collage featuring the documentary Complicated: the main film poster shows a silhouetted mother and child holding hands, alongside photos from screening events including a speaker presenting in a theater, attendees and families posing at screenings, and group photos from medical and advocacy conferences.

Why May is The Moment for “Complicated”

We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]

Dr. Rodney Grahame and Jan Groh smiling together at the EDNF conference in Rhode Island in 2013, standing in a warmly lit conference hall. Dr. Grahame is wearing a light beige blazer over a blue striped shirt and brown trousers, while Jan Groh is wearing a patterned dress with a long scarf, glasses, and a wrist brace, holding a blue water bottle.

Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)

On March 29, 2026, the Ehlers-Danlos Syndrome community lost one of our most beloved specialists and longtime champions of EDS, UK rheumatologist Dr. Rodney Grahame. He will be remembered as one of the earliest and most vocal advocates for Hypermobility Syndromes and EDS awareness.   I was first tipped off to the world of hypermobility at […]