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A girl in Saudi Arabia was diagnosed with classical Ehlers-Danlos syndrome (cEDS) after a seemingly spontaneous perforation in her stomach wall, according to a case report. With increasing reports of such cases, patients need to be educated about EDS and offered family counseling, the researchers wrote. The study, “…
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Women with hypermobile Ehlers-Danlos syndrome (hEDS) show similar physical functioning, as well as muscle strength, density, and mass, compared with those with hypermobile spectrum disorder (HSD), a study found. However, both patient groups have worse physical health and muscle strength than healthy women of the same age. The study,…
A new mutation in the COL3A1 gene has been linked to vascular Ehlers-Danlos syndrome (vEDS) in a woman in Japan, scientists report. This genetic variant — which was not found among more than 8,000 healthy Japanese people nor in worldwide databases of disease-associated variants — adds to the increasing number…
A retrospective study by the National Institutes of Health (NIH) suggests that healthcare costs for those with rare diseases have been underestimated, possibly being three to five times higher than for those without rare diseases. This study provides evidence of the potential effect rare diseases may have on public health…
Pain management is a little bit of trial and error, and taking the time to figure out what works best, says columnist Karen Del Vecchio.
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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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