I’ve been sick my entire life.
Sick with this, sick with that, sick with everything. I’ve always known that *something* else was wrong underneath it all. There had to be a genetic reason for my suffering. I knew it, but no one believed me. No one ever believes a precocious 16-year old with a notebook filled with the research she’s done.
They deny you, they ignore you, they tell you it’s “all in your head.”
Until I was admitted to the hospital with leaking heart valves, dangerously high blood pressure, and erratic heart rhythms. I am only 23 years old, and I take more heart medication than your grandmother.
My heart pounds. I get migraines that last days. I dislocate my hips while being intimate with my partner. I tear tendons and ligaments in my joints, needing with reconstructive surgery without ever having a traumatic accident.
You touch me and I bruise.
I’m TWENTY-THREE years old! Why do I feel like I’m 80? I’ve seen all the doctors, I’ve parked myself in the emergency room insisting to be seen by a specialist. I’ve been tested for everything. And yet, nothing.
At least… that’s what I’d thought. My doctors believe I may have Vascular Ehlers-Danlos Syndrome.
Vascular Ehlers-Danlos Syndrome scares me. Ehlers-Danlos Syndrome affects the body’s collagen production. Collagen is the glue that holds the connective tissues together. If your collagen is defective, it can lead to lots of problems.
The vascular subtype of EDS affects the internal organs more severely than the other types. Patients stand the risk of rupturing hollow organs; patients stand the risk of sudden death. Aortic dissection, stroke, intestinal perforations…your internal organs just rip open.
The average life expectancy is 48 years.
Have I already reached midlife…?