hEDS diagnosis brings relief, helps overall well-being, survey says

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Updated on May 4, 2024

hEDS diagnosis brings relief, helps overall well-being, survey says

An article from Ehlers-Danlos News shares news from a survey of adults with hypermobile Ehlers-Danlos syndrome (hEDS) found that receiving a diagnosis led to a sense of relief, helped patients manage their symptoms and prepare for the future, and had a positive impact on their quality of care, support network, and overall well-being.

The results suggest most participants were pleased when they got a proper diagnosis. They shared, “A positive diagnosis led to a sense of relief in most participants (85.6%), though some reported feeling anxious (40.9%) and depressed (13.2%). About one-third expressed anxiety about insurance discrimination (36.1%) and employment discrimination (38.5%).”

The survey was detailed in the study, “Patient experiences of receiving a diagnosis of hypermobile Ehlers–Danlos syndrome,” published in the American Journal of Medical Genetics.

 

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