Discussions By Condition: Medical Errors

My Ehlers-Danlos Story

Posted In: Medical Errors 0 Replies
  • Posted By: Anonymous
  • April 13, 2009
  • 11:25 PM

I am currently 25 and have a combo of Type III and Type II Ehlers-Danlos Syndrome (EDS). I was fairly fortunate in that I do work in the industry (clinical laboratory), so I do have a few doctor friends and it really has helped pave the way for better treatment. When I was a kid, I remember not being able to keep up with my friends; I dreaded theme parks because half-way through the day, while everyone else was still bouncing with energy, I would be dragging myself along and crying in pain. No one really understood what it was like and since there wasn't a name for it, I felt I looked weak. Then again, I also didn't understand that the pain I was experiencing wasn't "normal." As I got older, I was less able to do the things I really enjoyed... I used to build custom cars and did some construction. As of 22, I was in too much pain to continue and ended up taking a job in a lab. I had been to see doctors before (I had to have an Atrial Septal defect repaired when I was 2... no complications though) and no one thought anything was amiss. I was told my pains were normal "growing pains" and that eventually I would grow out of it. Basically, the brush-off, take-two-aspirin fix. My diagnosis came more by accident than good medicine as I had been talking and joking with one of my good friends (who happens to be a doctor) when I showed him how I could dislocate my wrists. To make a long story short, he said it was NOT normal and that I should go to a geneticist. After hunting around and getting referrals from friends, I did get in to see one and was formally diagnosed. The older I get, the more pain I find that I have. Fortunately, I have a wonderful husband that is more than understanding... he is my pillar of strength. I decided long before I found out I couldn't have children that I did not want to have any (biologically at any rate) because I couldn't in good conscience run the risk of passing this along. For everyone that can't get a good diagnosis/doctor, I really feel for you all... I just had good luck after about 24 years of bad. Sometimes it comes by accident, but you would think that a professional who went to school, passed tests, and theoretically knows so much could know so little. The face of medicine that most people see (those not working in the field) is just a mask... the real face that those of us on "the inside" see is absolutely frightening.

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