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10.1186/s12943-020-01197-3 95 MaaroufiK.AmmariM.JeljeliM.RoyV.SaklyM.AbdelmelekH

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Dickinson, who finally received her hEDS diagnosis in 2014, says taking the wrong medication wrecked me from head to toe. Now that shes receiving treatment, I can walk with mobility aids, but most of my body has to have constant support to function. Lara Bloom, president and CEO of The Ehlers-Danlos Society, who herself has hEDS, says many patients have medicalized PTSD. They have had to stop their careers, theyve had to drop out of school, their relationships have broken down. The delay inevitably results in worsening symptoms and a declining quality of life, she says