People With Ehlers-Danlos Syndrome Explain What It Feels Like

(EDS) is a group of connective tissue gene disorders, and symptoms include skin that tears or bruises easily and unstable joints prone to frequent dislocations, among other issues. EDS affects somewhere between 1 in 2,500 to 1 in 5,000 people in the United States, but understanding of the disorder tends to be limited among society and medical professionals. Some individuals with EDS…

‘Running on borrowed time’: Doctor’s arrest delays surgery for Erika Crawford-Ehlers-Danlos syndrome

A St. George woman who has been battling a rare and potentially fatal disease for four years has received another setback. Erika Crawford was diagnosed with Ehlers-Danlos syndrome, which can cause the body’s connective tissues to degenerate, in 2012. Her parents say she now takes “high levels of hydromorphone” to deal with the pain. She…

Living with Ehlers-Danlos Syndrome: “Sometimes I just don’t have it in me to be inspirational”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from previous contributor Michael Bihovsky. I have a connective tissue…