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 […]
As a mother of three children living with Ehlers-Danlos syndrome, the start of a new school year has always brought a certain amount of anxiety. While many of my mom friends and their kids were shopping for new clothes and school supplies, excited about the possibilities of a fresh start, my back-to-school “to-do” list often […]
There’s a particular kind of exhaustion that has nothing to do with the joint pain, dysautonomia flares, or GI symptoms. It has everything to do with how you’re expected to present those things to other people, specifically your healthy, able-bodied friends or coworkers or strangers on the street. If you have Ehlers-Danlos syndrome (EDS) or […]
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. […]
This month, we spoke with Amy Wang-Hiller, a violinist living with quadriplegia, hypermobile Ehlers-Danlos syndrome (hEDS), and related complex neuro-connective tissue conditions. As a violin instructor, Amy works with intermediate and advanced musicians navigating changes that affect performance, such as complex neurological disorders. She is also a disability advocate, founder of the InclusiVibe Foundation, and […]
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 […]
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 […]
Going off to college is an exciting time, filled with new adventures and much more freedom, both personally and academically. However, it can also come with numerous challenges, particularly for students with Ehlers-Danlos Syndrome (EDS) and related conditions. On the positive side, increased independence means students with EDS may be able to manage some […]
Ehlers-Danlos Syndrome May Increase Susceptibility to Infections
EDS, POTS and MCAS Linked by One Gene Mutation
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”