I am 61 years old, and a little less than two years ago I was diagnosed with hypermobile EDS (hEDS.) I am grateful for all the research on EDS, the informative resources available on The Ehlers Danlos Society’s website, and the prompt answers to all of my questions. It’s tremendous to not feel alone. I […] View page
In the summer of 2019 it was announced that there were changes to codes in the ICD-10 directory. We wanted to update our community with what that means going forward. The ICD is owned by the World Health Organisation (WHO). The 5th edition of ICD-10 was published by the WHO in 2016. Many countries use […] View page
I’m Ashley, 34 years old from Canada and living with hEDS, PoTS, gastroparesis, mast cell, and all the lovely things that come with EDS. My story is lifelong and has been physically and mentally draining. As a child I had many EDS traits that caused me problems, but I did not know at the time […] View page
UPDATE: November 11, 2019 Last week a paper by Demmler et al. was published looking at patient records from healthcare service databases in Wales over 27 years up to 2017. The study reported that either the diagnosis Ehlers-Danlos syndrome (EDS) or Joint Hypermobility Syndrome (JHS) was found in the healthcare General Practice or Hospital records […] View page
Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I acted, walked, and did other activities, but we weren’t quite yet at a stage where we could pin point what it was. As I began […] View page
“You just have to learn to live with the headaches.” The doctor looked at me with a complete lack of interest, clearly not caring about what that sentence might mean for a 20-something trying to adjust to adulthood as a firefighter/paramedic. I had spent months trying to ignore the pain, overcome the balance problems, and […] View page
Response to British Society for Rheumatology “Guidance for Management of Symptomatic Hypermobility in Children and Young People – A Guide for Professionals managing Children and Young People with this condition” June 2019 In June 2019 the British Society for Rheumatology published an update of its 2013 document entitled “Guidance for Management of Symptomatic Hypermobility in […] View page
Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […] View page
My story is like most with EDS. As a young child, I heard “it’s just growing pains” multiple times. As a teenager, my immune system dipped and infection wreaked havoc on my body. It wasn’t until a virus came a few years later that left permanent damage. I was diagnosed with hypermobile EDS (hEDS) in […] View page
After 24 years of searching, countless genetic tests and doctor appointments, I was given my diagnosis of kyphoscoliotic Ehlers-Danlos syndrome-FKBP14 variant (kEDS-FKBP14). That day, I not only got a name for the condition that plays such an immense role in my life, but I got a tool: I got a name, a word, to help […] View page
