Ehlers-Danlos
Horizontal Parenting: 5 Strategies I Used After Surgery as a Disabled Single Mom
I live with Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), mast cell activation syndrome (MCAS), and Sjogren’s. Over the years, I’ve undergone more than 40 surgeries, including spinal fusions and brain surgery, many performed while raising my son alone. My son was born 11 weeks early and spent 63 days in the NICU. We […]
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 […]
Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)
On March 29, 2026, the EDS 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 EDS awareness. I was first tipped off to the world of hypermobility at age 40 by my […]
A Thank You to Karina Sturm for Her Leadership at Chronic Pain Partners
We want to share our sincere thanks to Karina Sturm as she steps down from her role as Editor-in-Chief at Chronic Pain Partners. Karina’s drive and mission have always been deeply personal, shaped by her own journey with EDS and invisible disability. Since joining us in 2019, Karina has poured her heart and soul into […]
Episode 4: Movement Therapy and Support Aids with Jeannie Di Bon
In this episode, Cassandra and Marcia are joined by Jeannie Di Bon, a movement therapist, educator, author, and founder of The Zebra Club. Jeannie Di Bon developed the Integral Movement Method, an evidence-based approach that integrates rehab, Pilates and nervous system regulation to help people move with less pain, as well as more control and confidence. Listen to […]
New App Can Help Screen for EDS
The Hypermobility Assessment Tool (HAT) app empowers patients who suspect they have EDS by putting the first steps of the screening process directly into their hands.
The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible
The Hidden Disabilities Sunflower lanyard can help patients with EDS signal to others that they may need extra understanding, support, or time in workplaces, shops, or other public spaces.
Update On Gene Linked to Hypermobile EDS
A new study, led by Dr. Cortney Gensemer, marks a genetic breakthrough in hEDS research. The KLK15 variant (p.Gly226Asp) has been identified as a direct disease-causing gene in hypermobile EDS, causing connective tissue dysfunction and immune system dysregulation.
