Within three months of an Ehlers-Danlos syndrome (EDS) diagnosis, many patients and their parents felt there was a lack of related educational materials, which was a barrier to their knowledge and comfort in managing the condition, according to a new survey study conducted by U.S. researchers. The respondents also…
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The last couple of weeks have been fun, but stressful. I love the holiday season, but that doesn’t mean that the business and stress of it all doesn’t get to me. I had a blast with my brother and his family, but since they live abroad, we try to…
People with Ehlers-Danlos syndrome (EDS) living in the U.S. face high healthcare costs, with the annual median out-of-pocket expense exceeding $13,000, a study found. The findings “highlight the magnitude of the burden of health care spending on patients with EDS,” with “both direct and indirect costs of accessing and…
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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