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

The unknown is very frightening. I worry about Ryan constantly. It
breaks my heart to see our children deal with all of these health
problems at such a young age. He seems to take it a day at a time, and
tries to think postively. I know he worries but doesn't let me know he
does. I think it helps them to have someone to talk to. Ryan used to
see a therapist and I think it helped him a great deal with his health
and social anxiety issues. Ryan is also concerned about his looks. His
eye problem has caused impaired vision and light sensitivity, so he
can't always look directly into a person's eyes when talking. He is
very self concious about this.
Ryan has felt well for the most part while on cortisone for the
addisons. He is tired frequently, and sleeps more, but does work five
days a week, and has insomnia sometimes. While on the Immuran he also
felt well except for a few eye infections, and one bout of shingles.
He was on prednisone for a few months before the Immuran, and then the
prednisone was discontinued. He took the Immuran for about 2- 2 1/2
yrs. His doctor told us many people take Immuran and seem to tolerate
it well. Hopefully Jessica will do just fine.

We are all here to help and support each other so please feel free to
email whenever you want. It helps so much to talk to other moms and
patients who are in the same situation.
Keep in touch and take care,
Vicki

> Thank you so much for the reply. I am so afraid of the unknown
possiblities in the future. So is Jessica. She asked me the other
day if she will die? I was unsure of how to answer the question. I
did tell her that she needs to do one thing, to be a 15 year old girl.
I would do the worring, and she would do the other. Again with her
wonderful smile, she said okay mom, I will do my best. Like any other
15 year old, she is concerned with her looks. She is worried about
the steriods and how she will feel. We have many questions regarding
the Imuran and steroid therapy. How do you feel, how long etc. But
once again thanks for email. I will let Jessica know aobut your
letter. Mary in Idaho
>
> vrobson1 <vrobson1@.. .> wrote: --- 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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