Thank you all so so much for your encouraging words. It is giving us
so much hope with all the uncertainty we are going through. The
messages made us cry at the wonderful lives that can be lived despite
the disease. It is so promising. We are overwhelmed with the care
and detail and hope in each of your messages.
We wanted to get a broad message out to everyone but we will also
reply individually to each of you as well.
We live in Alpharetta, GA. We started seeing doctors here when we
noticed some symptoms yet didn't know why he got thrush every 3 weeks
starting a 9 months old. Then the nails stopped growing, flattened,
fell off etc. A rash developed with a high fever, the rash lasted 6
months. We did everything to try to find out what is was.
Docotors, speicalists, IDs, dermatologists didn't know what was
wrong yet always told us stop worrying, he is healthy. We kept on
and on getting fustrated becasue we knew all this was not normal. We
finally went to Childrens Hospital in Philidelphia which we heard
was one of the countries leading children hospital. The ID there
thought APECED was not probable but did the genetic test anyway and
it came back positive last week.
We would be encouraged if you could share with us the best hospitals
doctors etc...and any other helpful advice. We would also be
encouraged if we would be able to discuss this with anyone on the
phone..
Lastly our doctor in Childrens Hospital of Philadelphia recommeded
their immunologist Dr Sullivan..we would travel there or anywhere for
help for our son - has anyone heard of her? Is she good? Thanks again
to all of you for your replies - and we want you to know that we are
praying for all people with this disorder. Thanks to you all,
Susan and Chris