Ehlers-Danlos Syndrome

In June 2016, I was diagnosed with Ehlers-Danlos Syndrome hypermobility type after a 5+ year struggle of misdiagnoses and several doctors and specialists.

Ehlers-Danlos Syndrome is a multi-systemic rare disease that is genetic and caused by producing defective collagen. The defective collagen causes hypermobile joints, chronic pain, thin skin, (cigarette paper) widened thin skinned scars, frequent bruising, massive tendon issues, and poor wound healing. It is also multi-systemic so not JUST about the joints and skin. Someone with EDS can have gastrointestinal issues, mast cell reactions, lung problems, eye issues, hearing issues, migraines, chronic pain, and chronic fatigue. I have all these issues.

The “mascot” of EDS is a zebra. A large majority of people diagnosed with EDS are given false diagnoses. I was diagnosed with arthritis and fibromyalgia despite not having either of those. I am more sensitive to touch, but my chronic pain isn’t fibromyalgia (at least not yet… lots of people with EDS can have both diagnoses and often develop fibromyalgia later in life after years of chronic pain). The biggest thing I heard from health professionals was that all my issues stemmed from being overweight. When my hip started dislocating in my sleep, I was told “that is not a thing” and dismissed with a diagnosis of fibromyalgia. It’s tough to hear this constantly from doctors. Most of this comes from lack of knowledge about rare diseases and their multi-systemic symptoms. I’m doing my part to aid in awareness and make EDS a household name so that health professionals don’t dismiss someone like me in the future.

Blog posts on chronic illness.