A group of advocate athletes known as Team Victory ran last weekend’s New York City Marathon, raising more than $70,000 in support of The Marfan Foundation, an advocacy group that helps advance research and support people with Marfan syndrome and Ehlers-Danlos syndrome (EDS). One of them was…
Discussion
Just when I thought I could finally cancel my frequent flyer club membership with our local emergency department, I found myself back there for the first time in a record seven months! My last visit was due to a frightening reaction to an iron infusion last winter, and I was…
Discussion
People with Ehlers-Danlos syndrome (EDS) face an average eight-year wait for an accurate diagnosis, partly because no single hospital or clinic holds their complete medical history, according to a new analysis by Novellia Research. The study found that about one-third of an EDS patient’s medical history sits in…
Becoming educated and informed about Ehlers-Danlos syndrome is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your journey.
There is no cure for Ehlers-Danlos syndrome yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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