- Posted January 22, 2014 by
St Clair, Missouri
This iReport is part of an assignment:
Living with a rare disease?
20 with Ehlers-Danlos Syndrome
When I was a freshman in highschool I was diagnosed with Ehlers-Danlos Syndrome. It's a rare disease in which the collagen in my body isn't made right. The results are my bones coming out of socket, soft and fragile skin, chronic joint pain, intestinal ruptures, and various other problems including my nervous and circulatory system. As I age, it'll only get worse. I will eventually have to have several joint replacements because all my joints are too soft and will wear down. There is no cure or treatment for this, only pain management. I have been taking Perocets since I was 17 for the pain.
Because it isn't well known, I was often bullied in school, especially gym class for being slow and not being able to run or lift my own body weight- it was too painful. Shortly after both my mother and I were diagnosed we shared the information about it to my mothers side of the family being that Ehlers-Danlos Syndrome is hereditary. My mother's side of the family claimed both my mother and I were crazy, and that we were making things up. Now the entire side won't associate with us. Not only this, but I can hardly get a job anywhere because no one wants to hire someone like me. Even when hired, I've been called a "hypochondriac" by more than one manager. What affects me the most is the dissapointed looks I'll get from friends when I tell them I can't go dancing, climbing, running, etc etc. I just can't do it. It hurts too much. I'm only 20 and I can't go out and live my life in fear that I'll damage my joints too much. It's not fair that I should get discriminated against just because I don't look sick on the outside.