Hi,

My name is Julia - I live in Ohio and am now 27. I was diagnosed
with APECED at age 5. I first showed symptoms of candidiasis, like
your sone. It is GREAT that they made the diagnosis soo early - you
may think this strange, but many of us went years before getting a
diagnosis and subsequesntly had some other issues. I won't go into
what your son's course might be - it would be speculation. I
encourage you to find an endocrinologist near you or at the nearest
big city University. We used to travel 2 hours for my endo appts
when i was a kid, just so we could get the best care. I feel it was
worth it. Did I live a normal life? Yes Yes Yes! I went to
overnight camps, played soccer and tennis, did ballet, took music
lessons, graduated at the top of my class - got a master's degree and
am now soon to start a family through international adoption. My endo
wrote in my letter of rec to the country we are adopting to - that my
prognosis is to live a "full, long life" with proper treatment and
that my disease in no way inhibits my ability to parent. In summary,
although this disease can be very scary, and there will be trying
times - many of us on this board are older now, and we all say, we
came out allright.

Please use this group to ask questions, seek support, or just gain
further understanding - we are here for that and would love to help
you gain sturdy footing.

Julia Richardson (Columbus Ohio)

--- In apeced@yahoogroups.com, "ethanbaggett02" <ethanbaggett02@...>
wrote:
>
> Hello,
> My name is Donna and my son Ethan was diagnosed in january,
he is
> 6 years old. It took the doctors 5 years to diagnose him we went
threw
> alot of hospital stays that started out with high fevers and
> candidiasis.And adout 3 months ago they diagnosed him with
> addison's,hypoparathyroidism,he all so has the loss stools.The
doctors
> are working on it now.If you tell me were you are from maybe
Ethan's
> doctors can help.We live in Chatsworth Georgia.
> Donna
>
> - In apeced@yahoogroups.com, "rubiose" <rubiose@> wrote:
> >
> > Hello, our 19 month old son was just diagnosed with APECED. It
was
> > confirmed with a genetic test. His symptom was candidiasis -
> recurring,
> > a rash that lasted 6 months and soft stool chronically. My wife
and I
> > are seeking where to turn for the best medical care and useful
> > information from those who have this. Any stories and prognosis
would
> > give us hope. Presently we are very scared from what we read here.
> > We would greatly appreciate any support - and any networking or
> support
> > groups that can help us. Can people live long quality lives with
this
> > disorder? Please help
> >
>