Search the web
Sign In
New User? Sign Up
apeced · APECED SYNDROME
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Want your group to be featured on the Yahoo! Groups website? Add a group photo to Flickr.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

  Messages Help
Advanced
New to the group - anyone in the US?   Message List  
Reply | Forward Message #23 of 593 |
HI all,

I'm new to the group - a veteran of APS I though as some others I've
seen on here. I am 26 and have had this for 23-24 years. I was
diagnosed late with hypoparathyroidism - i had seizures at age 3 but
the doctors thought it was epilepsy. It wasn't until my
opthamologist noticed my ugly nails and cataracts in both eyes that
he alerted the endocrinologist of possible hypocalcemia and
hypoparathyroidism. I also have Addison's Disease, Pernicious
anemia, diabetes insipidus (not to be confused with diabetes type 1
or 2), enamel hypoplasia(lack of enamel on most teeth) and chronic
yeast infections and fungal infections. I function well - with
Addison's being the most difficult to deal with - I work now -
looking to go full-time soon (just graduated so I'm in the job
hunt).

I'm curious though, I had human growth hormone deficiency as a child
and that is not typical with APECED. Anyone else have pituitary
gland involvement or their children have it?

Also, from my research it seems as APECED is autosomal recessive,
APS I patients have ancestry to Finland, Iranian Jews, or
Sardinians, so how I am in the US with this I can only gather I
probably am from Scandinavia way back some time - I'm only aware of
Irish descent on my mother's side. Anyway, is anyway in this group
from the US? It seems that there is more research and knowledge
about this in Europe, unfortunately for me. I'm just curious.

Glad to join this group.

Julia





Wed Nov 1, 2006 7:40 pm

juliap99
Offline Offline
Send Email Send Email

Forward
Message #23 of 593 |
Expand Messages Author Sort by Date

HI all, I'm new to the group - a veteran of APS I though as some others I've seen on here. I am 26 and have had this for 23-24 years. I was diagnosed late...
juliap99
Offline Send Email
Nov 1, 2006
7:45 pm

... Welcome to the group! My 24 yr old son has APS and we live in Houston. His started with inflamation of the corneas at age 4, then chronic yeast infection...
vrobson1
Offline Send Email
Nov 1, 2006
8:18 pm

Hi Vikki, Thanks for the information and encouragement. Please send my encouragement to your son. I know how hard college can be when your health is not...
Julia Peterson
juliap99
Offline Send Email
Nov 1, 2006
8:32 pm

... Thanks, I will give my son your message. Congratulations on finishing college. I hope things go well for you. My son sees an endo here at Baylor College of...
vrobson1
Offline Send Email
Nov 1, 2006
9:54 pm

HI Vicki, We struggled with the prednisone dosage for a while - first it was when, and then it was how much. I eventually have come to what I consider the...
Julia Peterson
juliap99
Offline Send Email
Nov 2, 2006
5:32 pm

Hi Julia, My son is currently on the same dosage as you are, 5mg in the am, and 2.5mg at dinner. It was increased to this dosage about a year ago. He still...
Vicki Robson
vrobson1
Offline Send Email
Nov 2, 2006
7:56 pm

... Welcome to the group! My 24 yr old son has APS and we live in Houston. His started with inflamation of the cornea at age 4, then chronic yeast infection of...
vrobson1
Offline Send Email
Nov 1, 2006
8:18 pm

Hi Julia, i also was wondering where apeced came from in my family i thought it came from iran or finland but i have since discovered that it may orginate from...
kathy
kateee5j
Offline Send Email
Nov 1, 2006
10:09 pm
Advanced

Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help