--- In apeced@yahoogroups.com, Mary Spraktes <mspraktes@...> wrote:
>Hi Mary,

Welcome to our group. My 24 yr old son has APCED also. His began with
inflamed corneas and candidiasis at age 4. At age 15 he was diagnosed
with AIH and hypoparathyroism. Then addisons disease, thryoid, and
loss of tooth enamel at age 20. His eyes are his main concern
currently.
He has taken Immuran for two years and is now off. When he was first
diagnosed with AIH we were told it was to the point of cirrohsis,
and he would probably need a transplant around age 18. It has now
improved to fibrosis, and his liver enzymes have been normal for a
long time now. I know many patients take Immuran for very long
periods of time. The length of time depends on the condition of the
liver and your doctor's suggestions.
We have so many nice people on this site who are here to help and
share experiences. As we all know it is not easy having a child with
such a rare disease. Please keep in touch.
Take care,
Vicki
> 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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