Being chronically ill is overwhelming to say the least. And not just in the ways one might think: struggling to ration energy, manage multiple conditions, balance symptoms, never-ending doctors’ appointments and the financial burdens. There are so many more silent battles we fight. We are referred from provider to provider, yet often receive conflicting opinions […]
Singer-songwriter Cami Clune, known for her appearance on NBC’s The Voice, lives with Ehlers-Danlos syndrome, mast cell activation syndrome and dysautonomia. Following the July release of her debut album, should be sleeping, Chronic Pain Partners spoke with Cami about what it’s like to live with a condition no one can see while performing in front […]
You feel lightheaded when you stand, have brain fog, palpitations, exercise intolerance, fatigue, and headaches. If your general practitioner is knowledgeable (and that’s a big “if”) they give you a referral to a specialist who runs appropriate testing to see if you have postural orthostatic tachycardia syndrome (POTS). Your tilt table test may suggest too […]
Being diagnosed with Ehlers-Danlos syndrome can feel like a major feat to some. Maybe you’ve been advocating for a diagnosis for a while, or maybe this was a shock to you. In both scenarios, sometimes you get to the other side of the diagnostic process and realize it doesn’t just stop there. Now is the […]
Hypermobile Ehlers-Danlos syndrome (hEDS), and the closely related hypermobility spectrum disorders (HSD), are commonly thought of as conditions that primarily affect women. Walk into any EDS support group, online community, or clinic waiting room, and the overwhelming majority of people there will be female. But does that mean men are truly less affected, or does […]
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, […]
Have you ever clicked on the webinar section of our Chronic Pain Partners website and looked through the archives of the presentations featured? In 2013, our founder, John Ferman, started this highly popular educational series with a clear mission to provide free access to emerging research interpreted by experienced physicians. Wow, did he succeed! Looking […]
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 […]
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”