When my daughter Sarah was four months old she was diagnosed with Leber's congenital amaurosis and determined to be legally blind. She was a patient at Bascom...
Hi Babette, Good to hear from you.Has Dr. Levy confered with Dr. Noel Maclaren since they are both at Cornell Medical Center in NYC? Dr. Marclaren is one of...
Hi Linda, I have personally seen Dr. MacLaren but I believe that it was before her ERG and we were still going with the working diagnosis of Leber's....
Hi Babette, Thanks for filling me in on Sarah's history. I will let you know the final diagnosis for Tara when the testing is complete. Best wishes, Linda PS....
I am curious as to how many people with APECED have eye involvement. My Julia has fairly severe photosensitivity and very dry eyes which affect her vision. We...
Hi Jennifer, James has keratoconjunctivitis. He has severe photosensitivity, scarring of the cornea as well as vascularisation of the cornea. His vision in...
I have a question for everyone i have been watching My Ethan's hair an it is thining.I trided to put it in the back of my head.But today i took him for a hair...
Jennifer I think a registry would be great if we only knew what to do to get one.I hate going to the doctor an having to tell them all about Apeced then they...
Hi Donna, James has alopecia - his is mainly patches and he shaves his head as he prefers that look to patchy hair. He didn't have any tests done to confirm. ...
Dear All, My eyes have been very sensitive to light for years, but the doctor's never see anything during exams. What would be the evidence of the reason for...
The neuro-optholmologist confirmed today that Tara has retinitis pigmentosa. He had ordered a multi focal erg-ver test which she will have on Mar. 30. So far...
Hi All - I hope this email finds everyone well. I was interested in getting some advice. My son jospeh is 2 1/2 years old. He gets candidiasis; had a...
HI! I had no idea that SArah had apeced until she had her seizure one year ago, going on three years of age. She had other symptoms but the doctor's thought...
Hi The reported steps of APECED are the Candidiasis and nail dystrophy at around 2 years, Hypoparathyroidism around 8-12 and Addisons around 12-17. But that...
HI,  All three of my children have APECED. The first sign we had was when my eldest daughter had a siezure after blowing up balloons, this was due to low...
Hi, James, my husband, had a seizure at 18 months and was diagnosed with hypoparathyroidism. He had checkups with the endocrine clinic at the local children's...
Hi all, Some of you may know we are in the process of adoption. We started international adoption in Sept of 2007. We didn't try to have biological children...
I know medical professionals state that the hypoparathyroidism usually comes before the Addison's, but not always true. I am 26 now. I had problems with...
Congratulations Julia, he is adorable!! It was nice to see a picture of you too from your blog, to put to your name thru the group! Enjoy your time with your...
Congratulations Julia! And thank you for sharing your exciting news. Micah is just gorgeous. Wishing you all the best in your journey to pick up your son. ...
Hi Julia, Micah is BEAUTIFUL!! God Bless you and your sweet family and may the journey to Ethiopia be the beginning of a wonderful life for the three of you. ...
I have had APECED since I was 9. I am now 43. I have hypoparathyroidism, Addisons, and Hoshimotos. Generally speaking, when I have had a good endo doctor who...
Congratulations Julia! I am so happy for you and your husband. Micah is beautiful and what a blessing he will be! Enjoy him;, they grow up fast! ... ...
hi there to everyone, i noticed your recent email re: your sons condition. we have 2 children with apeced-both presetned differently at different stages. both...
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