Tag Archive: advocacy
When Halle was born and they placed her on my chest, I immediately knew something was different. As the labor and delivery nurse was wiping her down I remember she said to me, “What’s wrong sweetie? You look worried.” I noticed Halle felt floppier than my first two kids. She also had very large gums, View page
The EveryLife Foundation for Rare Diseases has published its findings on the economic burden of rare diseases in the USA. Through the advocacy work of our Community and Advocacy Director, Shani Weber, The Ehlers-Danlos Society was invited to share the Foundation’s survey questionnaire. Members of the EDS community in the USA contributed to the survey, View page
My name is Lane Cooper. On October 23, 2016, I was stacking firewood with my uncle, when I went home I started urinating blood. I went to the ER and was diagnosed with autosomal dominant polycystic kidney disease (ADPKD), which started my medical decline. A few months later I started having a lot of pain View page
I am a 21-year-old female. I was diagnosed with Ehlers-Danlos syndrome (EDS) when I was 6 months old. My father has EDS as well, and he noticed when I fell off a couch that I had a cut shaped as a triangle or as I call them “smiley faces”. He automatically knew what I had View page
CW: Contains discussion of self-harm Growing up I felt unique and different; I used to always freak out my friends by hyperextending my elbows and thumbs. I had no idea what Ehlers-Danlos syndrome was, nor did I know how it was going to affect my life in the future. I went to college at Christ View page
After decades of dealing with quirky, what I thought were unrelated, health issues I was finally referred to a specialist in Boston. Last month, after a thorough evaluation and review of my history, my geneticist diagnosed me with a connective tissue disorder known as Ehlers-Danlos syndrome (EDS). Not only does this diagnosis account for the View page
I come to you today as a patient expert, disability justice activist, and advocate. Advocacy and activism is work that many people find themselves doing as a direct result of experiences they’ve had in their lives or been part of through the lives of those close to them. While not always the case, I have View page
I served eight years in the United States Army as a 12 bravo -Combat Engineer. We carry all explosives that you would need to clear or breach any obstacles in the army’s way. I always had issues growing up but never could find a reason for my pain and joint issues. One day, View page
It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was View page
My name is Gafsa Garson and I am known as Gafsa Bux. I was an operational nursing manager at Groote Schuur Hospital. I started having severe back pain in 2018, I saw a neurologist and an orthopedic doctor, as I was also complaining of severe pain in my hands. The neurologist sent me to a View page
