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 unsure of how to answer the question. I did tell her that she needs to do one thing, to be a 15 year old girl. I would do the worring, and she would do the other. Again with her wonderful smile, she said okay mom, I will do my best. Like any other 15 year old, she is concerned with her looks. She is worried about the steriods and how she will feel. We have many questions regarding the Imuran and steroid therapy. How do you feel, how long etc. But once again thanks for email. I will let Jessica know aobut your letter. Mary in Idaho
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 hypoparathyroism. Then addisons disease, thryoid, and loss of tooth enamel at age 20. His eyes are his main concern currently. He has taken Immuran for two years and is now off. When he was first diagnosed with AIH we were told it was to the point of cirrohsis, and he would probably need a transplant around age 18. It has now improved to
fibrosis, and his liver enzymes have been normal for a long time now. I know many patients take Immuran for very long periods of time. The length of time depends on the condition of the liver and your doctor's suggestions. We have so many nice people on this site who are here to help and share experiences. As we all know it is not easy having a child with such a rare disease. Please keep in touch. Take care, Vicki > 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, anitbodies to ovaries. This January, she was diagnosed with autoimmune hepatitis. I would love to talk to other families that are going through the same things. One question that I have is to the best medication for the hepatitis. Several doctors have mentioned Imuran, steroids. Is there anyone out there with this aspect of the disease that could help
me. Also, we feel very worried regarding her best outlook. Up until this year, we thought that we were one of the few with APECED. Our information gathering has been bad. I am very excited to learn and hear from others who have been going through the same things as my daughter. Thanks Mary > > --------------------------------- > Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. >
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,...
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,...
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...
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,...
... 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...
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...
... 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...
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...
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....
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...
... has been diagsnosed since the age of 1. She has hypoparathyroid, lack of teeth enamel, anitbodies to ovaries. This January, she was diagnosed with...
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