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15year girl with APECED   Message List  
Reply | Forward Message #121 of 593 |
Re: 15year girl with APECED

Hi Mary and welcome to our forum!!!!
I won't go into too many details about my daughter, Tara, but
suffice it to say she started off with Hypoparathyroidism, then
Addisons by age 6, then Juvenile Rheumatoid Arthritis, age 14,
Ovarian Dysfunction, and at age 26 very severe diarrhea and
malabsorption and pernicious Anemia. At age 33 Type 1 Diabetes and
now, at 34, Vertilago.. Recently she had a bout of autoimmune
hepatitis and after a round of IVIG she started low dose Imuran.
This worked quickly and within a few months her liver function tests
were as normal as they have ever been. her only side effects from
the Imuran were intermittent stomach aches but she was able to deal
with them. I think she was more tired than usual also.

Please ask any questions of this group and we will try to answer
them.This is one of the most caring groups of individuals I have
ever encountered. I am also emailing you the link to an APS 1
(APECED) web site started by another parent in this group. Getting
on that mailing list will also be helpful because they are working
with NORD National Organization of rare Diseases) to try to get a
research grant and funding which might lead to further treatment
opportunities.
Again welcome and best wishes to you and your daughter.
Linda





Fri May 25, 2007 1:44 am

lsquittman
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Message #121 of 593 |
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Hello, my name is Mary. My daughter is 15 and has APECED. She has been diagsnosed since the age of 1. She has hypoparathyroid, lack of teeth enamel,...
Mary Spraktes
mspraktes
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May 24, 2007
1:49 am

Hi Mary, I have APECED, although in a different configuration than your daughter. I do not know if it is helpful or reassuring to you. But, I have Addison's,...
Dede Leydorf
dleydorf
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May 24, 2007
8:51 am

Welcome to this group! Everyone here (the few of us really since this syndrome is rare) are VERY informative and supportive. I, Julia, have had APECED since...
Julia Peterson
juliap99
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May 24, 2007
3:09 pm

Hi Mary and welcome to our forum!!!! I won't go into too many details about my daughter, Tara, but suffice it to say she started off with Hypoparathyroidism,...
lsquittman
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May 25, 2007
1:45 am

... Welcome to our group. My 24 yr old son has APCED also. His began with inflamed corneas and candidiasis at age 4. At age 15 he was diagnosed with AIH and...
vrobson1
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May 25, 2007
5:48 pm

Thank you so much for the reply. I am so afraid of the unknown possiblities in the future. So is Jessica. She asked me the other day if she will die? I was...
Mary Spraktes
mspraktes
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May 26, 2007
2:42 pm

... The unknown is very frightening. I worry about Ryan constantly. It breaks my heart to see our children deal with all of these health problems at such a...
vrobson1
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May 26, 2007
6:40 pm

Hi Mary- welcome to the group, I just discovered it a few months ago after meeting Vicki, her husband & Ryan while they were in the DC area seeing the same eye...
Jaci OBrian
jaciobrian
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May 27, 2007
12:43 am

Hi Jaci, I know that I am new to this great support group, but Jessica would love to be a pen pal. She likes to get on the internet and email and perhaps IM....
Mary Spraktes
mspraktes
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May 27, 2007
7:54 pm

Hi Jaci, Glad to hear Emily had a good visit with Dr. Winer. I have heard of the PTH injection and mentioned it to Dr. Winer when Ryan visited her. She also...
Vicki Robson
vrobson1
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May 27, 2007
9:42 pm

... has been diagsnosed since the age of 1. She has hypoparathyroid, lack of teeth enamel, anitbodies to ovaries. This January, she was diagnosed with...
Jerry Armstrong
navyhm1983
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Jun 25, 2007
9:43 pm
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