Hi everybody,
I'm a bit of a computer idiot so its taken me a few days to get set up
so that i can post.

I have been in contact with Linda for about 2 years and she told me
about this site.Thanks Linda for all your help . Its great to have a
moan and also a laugh with someone who knows what you're going through.

My daughter Sorcha who is now 9 firstly got sick around 2 years of
age. It began with terrible diahorea and very sore eyes. She had
severe photophobia and ulcers on her eyes. She was very sick for two
years until she was diagnosed with APECED after going into a full body
spasm due to her calcium levels going so low.

Once she got diagnosed and on her medication she improved greatly but
still had her ups and downs. She regularly gets her bloods checked for
calcium levels, she has hypoparathyroidism, underactive thyroid, had
the beginnings of hepatitis- now normal, has inactive ulcers now on her
eyes but they have left scars which affect her sight, missing dental
enamel , her nails were very broken - now grown out perfect. Still has
problems with malabsorption - but not as bad.

Thankfully at the moment she is in great form , full of energy . We
have been told to expect Addisons, diabetes and ovarian failure. No
signs yet, so far so good.

ITs great to be able to chat to other parents with children who have
APECED, so this site is going to be busy , i just know it.

Hi Katie in Belfast, Linda e-mailed me about you and your son Jason.
Sorcha and Jason seem to have a lot in common especially with the
photophobia and sore eyes. You are only about and hour and a half away
from us in Donegal so hopefully we will get to know each other.

For me anyway it was hard to take in all that was happening to Sorcha.
Its really only hit me two years ago what APECED is really all about.
My family have been great but even though ive told them what APECED is
i dont really think they understand. Ive got two other girls but they
dont have APECED.

Hope to talk to you all soon,

Jacqueline.