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Hi Mary,
I have APECED, although in a different configuration than your daughter. I do not know if it is helpful or reassuring to you. But, I have Addison's, Hypoparathyroidism, Hoshimotos, and pituitary dysfunction on the adrenal access, along with some kidney strain/stones, etc.
I work full time for the United Nations in Geneva, Switzerland. I have a full life, really no limitations that matter for me. I never did want to be an olympic athelete anyway. (:
My mother is a physician. She taught me earlier on to be the most knowledgeable person about my disease of anyone. Knowledge is power. Also, to simply live a healthy life and to not let the idea of the having the condition weigh on me. It helped that my mother and family treated me normally and had the same expectations of me as for anyone else. The thought never occurred to me that I might have a different
life than anyone else.
I wish the same for your daughter and that you find a good treatment for the hepatitus.
All the very best,
Dede
Mary Spraktes <mspraktes@...> wrote:
Mary Spraktes <mspraktes@...> wrote:
Hello, my name is Mary. My daughter is 15 and has APECED. She has been diagsnosed since the age of 1. She has hypoparathyroid, lack of teeth enamel, anitbodies to ovaries. This January, she was diagnosed with autoimmune hepatitis. I would love to talk to other families that are going through the same things. One question that I have is to the best medication for the hepatitis. Several doctors have mentioned Imuran, steroids. Is there anyone out there with this aspect of the disease that could help me. Also, we feel very worried regarding her best outlook. Up until this year, we thought that we were one of the few with APECED. Our information gathering has been bad. I am very excited to learn and hear from others who have been going through the same things as my daughter. Thanks Mary
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