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Hemochromatosis

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • May 18, 2007
  • 03:36 AM

In 1992 I developed blisters on my hands and around my nail beds. I have exzema and I just thought it was getting worse. People were also complementing me on my tan, only I wasn't tanning. Someone asked if I was having trouble with my safety glasses at work because I had such dark circles under my eyes. And a little boy told me that I sure was a hairy woman. I finally developed such bad blisters that I went to the dermatologist for my skin, it was tearing so easy because of the fluid built up under it. The doctor ran several tests and told me I had phorphia cutnea tarda. He also told me alittle history about it. Evidently a few families in Europe developed the same illness and this is where the vampire and werewolf stories came from. Over the next several months I had to stay out of the sun, be very careful not to damage my skin, I developed a staph infection, and give over a gallon of blood in phelbotomies, my hemoglobin was 18. Six years later I went to a rhumatologist for joint pain and he did a test and told me I had hemochromatosis. The "cutna tarda" was a symptom of the hemochromatosis. Later I found out I had a torn tendon. Since then I have been keeping my hemoglobin at 11 at one time it was 9 and I was anemic, go figure. Tomorrow I see the doctor because my thumbs hurt so bad, they did x-rays and said I have arthritis I've been taking medication and it's not working anymore. My question is what kind of damage has been done to my body when I was in the "cutnea tarda" phase of the hemochromatosis? If I keep the iron levels down will that keep me from damaging my body further? When I see the doctor tomorrow I will be sure to ask.

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