Welcome to the group. I am sorry to hear about your son. The diagnosis is very
hard to come to terms with, especially with all of the different symptoms
attached, but you are much better off knowing what you are dealing with.
There are more knowledgable people than me in this group, but I would be happy
to talk to you on the phone if that would help. Where do you live? Members may
be able to tell you where the best docs are in your area. We live in Toronto.
Our daughter is 3.5 yrs and was diagnosed a year ago. She had symptoms from 12
months. You may see from old posts that Julia's situation seems unusual as she
aspirates liquids (they go down the wrong pipe when she swallows and end up in
her lungs) so has had terrible lung problems. Otherwise, her disease has
followed a fairly typical course, rash, fever and candidiasis, followed by
hypoparathyroidism and Addison's disease. It is a lot to keep on top of, but in
general Julia is doing pretty well these days and we are preparing her for
school in the fall.
Please be reassured that while there are many challenges, there are older adults
living full lives with the disease.

Jennifer
Jennifer Orange
Torys LLP

----- Original Message -----
From: apeced@yahoogroups.com <apeced@yahoogroups.com>
To: apeced@yahoogroups.com <apeced@yahoogroups.com>
Sent: Fri Jun 20 22:54:10 2008
Subject: [apeced] Help Needed

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





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