If you have hEDS or HSD, it probably isn’t news to you that these conditions are sometimes associated with neuro-related comorbidities such as postural orthostatic tachycardia syndrome (POTS), craniocervical instability (CCI), tethered cord, and intracranial hypertension, among others. However, a new concept paper, released as a preprint on August 10, 2026, suggests that there may […]
For many people living with hypermobile Ehlers-Danlos syndrome (hEDS), one of the most frustrating aspects of the condition is pain that feels impossible to explain — burning sensations, widespread sensitivity, symptoms that seem to involve the whole body rather than just the joints. Standard neurological tests often come back normal, leaving patients without answers […]
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 […]
If you are among the many people with Ehlers-Danlos syndrome (EDS) who also have dysautonomia, summer can feel less like a season to enjoy and more like something to survive. Research suggests that dysautonomia affects approximately 80% of people with hypermobile EDS, making it one of the most common comorbidities associated with the condition. For […]
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 […]
This month, we wanted to give you a peek into the daily lives of our team members by asking them to share a few of their favorite go-to supportive items for Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD). While these aids might be what work for us personally, we hope they offer inspiration and ideas to help you live your life to the fullest with EDS/HSD.
Welcome back to Research Round-up where we feature some of the latest developments in Ehlers-Danlos syndrome (EDS) research. Hitch up your horse, gather ‘round the campfire, and see what we have in store for you today. ICYMI: a possible blood test for hEDS? Cardiology“Longitudinal echocardiography in pediatric patients with hypermobile Ehlers-Danlos syndrome”Published in the American […]
A wake-up call to the medical community sent directly with data from commercial health insurers A new study focused on the prevalence of multisystem diagnoses among hypermobile Ehlers-Danlos Syndrome (hEDS) patients sheds light on a critical aspect of this complex condition: the widespread systemic impact it has on the body and the connection to other […]
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Popular People With Ehlers-Danlos Syndrome
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”