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 […]
If you’ve landed here, maybe you have been quietly researching traits of autism, looking up screening questionnaires, and wondering if you could be part of the recently reported 39% of autistic patients that have co-occurring Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorder (HSD). Before I ever sat across from an evaluator, I spent months reading, […]
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. […]
If you’ve ever coughed while eating, felt like food got stuck in your throat, or found yourself avoiding certain foods because they’re harder to swallow, you’re not alone. Many people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) describe these experiences, yet swallowing problems are often overshadowed by other symptoms like joint pain or […]
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 […]
Living with EDS often comes with navigating an ongoing cycle of injuries, fatigue, symptom flares, medical appointments, unexpected setbacks, and uncertainty about what your body will do next. For many people, EDS-related stressors are cumulative, where each new experience adds to an already heavy emotional burden. Over time, this constant state of stress and adaptation […]
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”