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New to the group - anyone in the US?   Message List  
Reply | Forward Message #26 of 593 |
Re: New to the group - anyone in the US?

--- In apeced@yahoogroups.com, "juliap99" <juliap99@...> wrote:
> Hi Julia,

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
nails and mucuous membranes. At age 15, he was diagnosed with
autoimmune hepatitis, HPTH, then at age 20, addisons and underactive
thyroid. His vision is impaired and he has developed a cataract in
one eye. His eyes give him the most trouble of all. Ryan has attended
University of Houston for the last 4 years, but now is taking online
classes. He has missed several semesters because of health issues. If
it wasn't for the eye condition our son would function well also.
As far as ancestry goes, I believe we are from English and German
descent so I don't know how our son developed APS. There is no
history of autoimmune conditions in our family that we know of.
Please keep in touch,
Thanks, Vicki

> 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 8:14 pm

vrobson1
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Message #26 of 593 |
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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
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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
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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
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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
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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
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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
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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
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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
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Nov 1, 2006
10:09 pm
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