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