Tag Archive: advocacy

Advocating for Halle began the day she was born

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,
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The National Economic Burden of Rare Disease Study

The National Economic Burden of Rare Disease Study

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,
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Lane's streaming logo, DisabledGooru

How my gaming career helps me to raise awareness for EDS

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
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Growing up with cEDS

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
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vanessa f story

I’m newly diagnosed with EDS

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
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Marina takes a selfie wearing a Society tshirt in black with a white zebra. Grass and trees form a backdrop.

One story, one action, one change at a time

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
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A photo of me during my time in service with the 891st Engineer Battalion, 235th Regional Support Group of Fort Riley, Kansas.

I advocate for those with invisible disabilities

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,
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Barbara sits in front of her wheelchair, with a dog sat in her wheelchair, and a horse stood on a block behind her

My life finally started after diagnosis

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
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gafsa smiling in her wheelchair

My mission to raise awareness in South Africa

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
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