Hi Liz,
My daughter also has eye involvement with APECED. Her eyes are very dry, her
pupils do not constrict properly and she is sensitive to light. We give her
preservative free tears several times a day and cyclosporine eye drops
("Restasis") twice a day. The Restasis drops have helped the dryness and
photosensitivity. So far, her vision is fine. Her ophthalmologist is Asim Ali
at Sick Kids in Toronto. I know that he is happy to be contacted about APECED.
Check him out on-line and if you have trouble reaching him, let me know. The
general number for the hospital is 416-813-1500. You can just ask for his
office.
I do know that there is a 3 year old girl in NY with APECED who has lost most of
her vision due to retinitis. It is some to watch carefully for.
My daughter also has many symptoms. Hypocalcemia, adrenal insufficiency,
candidiasis, dry eyes and mouth, photosensitivity, enamel dysplasia, vitiligo,
malabsorbsion, chronic aspiration causing lung disease--I'm sure that there is
something I am forgetting. And my daughter is only 3. We have no idea what else
is coming. It is all overwhelming!
Let me know if you have more eye questions.
Jennifer.


-----Original Message-----
From: apeced@yahoogroups.com <apeced@yahoogroups.com>
To: apeced@yahoogroups.com <apeced@yahoogroups.com>
Sent: Fri Feb 22 05:48:10 2008
Subject: [apeced] Corneal dystrophy

Hi Everyone,
We are still trying to work out all what is going on with James and the calcium
prob, but we have a new problem. James's eyesight has been getting worse
rapidly and he has been getting more and more sensitive to light. Until last
year he had no problems with his eyesight. Anyways, we went to see an
optomitrist who said he has cornea dystrophy and he needs to have glasses which
we have organised. I came home and had a look at the APECED research online and
discovered that Keratopathy is part of APECED. Does anyone else have this
problem and do they know which form of keratopathy it is? Want to have some
information for the doc when we go back because he was writing this off as a
diabetic related problem that would fix itself when we got his diabetes under
control.

The other question I have is just out of interest... in my researching I found
an article that said most people with APECED have only 3-5 of the associated
conditions... so far James (who is 24 tomorrow) has 10 conditions! He has
adrenal failure, IDDM, parietal cell atrophy, hypoparathyroidism, candidiasis,
enamel hypoplasia, nail dystrophy, alopecia, vitaligo and now keratopathy. How
many do other people have??
Thanks!
Liz



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