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15year girl with APECED   Message List  
Reply | Forward Message #120 of 593 |
Re: [apeced] 15year girl with APECED

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 age 3 with hypoparathyroidism, enamel hypoplasia (the lack of enamel - which you can get this weekly flouride paste and that seemed to help me avoid cavities and pain - ask your dentist - I forget what it is called but it's like a flouride treatment every week) - human growth hormone deficiency, Addison's disease, and pernicious anemia.  It seems everyone here has different manifestations of this syndrome but we all find ways to help each other with one disease question or another.  There are some on here with autoimmune hepatitis - so I'll leave the question about that for them.  I just want to welcome you and let you!
 
Glad to see you have found us for support!  This is a great group!
 
Julia


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Thu May 24, 2007 3:07 pm

juliap99
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Message #120 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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