Hi, I haven't posted in a while - we're nearing the end of our adoption process so am busy getting things ready for our son. Anyway, I'm worried I may be...
Hi Julia,  Congratulations on your adoption. That is exciting news.  I think Linda may be the one you are referring to. My son, Ryan, has not yet...
Hi Julia, Congratulations on the adoption! James had a fast onset of diabetes - he just said it took about 5 days from when he started noticing symptoms until...
Thanks Liz - I remember hearing a bit on this. I'm a dietitian and do research in Type 2 diabetes so I know all about that but it is sooo different than type...
Hi Vicki, Julia and all, Yes Vicki is right- my daughter Tara was diagnosed with Type 1 Diabetes at age 33. She had no symptoms. She was actually at Dr. ...
I didn't want to confuse the issues so I thought I would post my question separately. Something new has popped up with Tara. We are not sure if it is APECED...
Hi Linda, I had cataracts whne I was younger and had my whole lens removed in both eyes. Due to extended contact wearing, my corneas are being damaged and...
Hi Julia, I will let you know what happens with Tara and you let us know how you are and when your son comes home. Linda ... know ... similar ... are ... She ...
Hi Linda,  Ryan's eye issues are with his corneas. They are scarred due to inflamation over the years and is developing a cataract, I believe from his...
Hi all, Hope you are well. Just a quick question... Does anyone have problems with memory? James's memory is shocking (for example he will get off the phone...
I had short term memory issues just prior to being diagnosed with pernicious anemia. It was caused by a B12 deficiency - not from diet but from the autoimmune...
Julia, After you found out about this Intrinsic Factor, how did they treat it? Michele ... From: juliap99 <richardson.jrr@...> Subject: [apeced] Re:...
Hi, James was diagnosed with pernicious anaemia in 2002. He currently has B12 injections every 3 weeks. I had thought that it might be that but he isn't any...
With pernicious anemia, B12 injections directly into the muscle are required since taking B12 orally would do no good since you cannot absorb it. I take...
Hi all, Just wondering if anyone has had tests to find out if they are carriers of APECED. James and I want to find out before we have kids and the genetic...
Hello mates! Planning on building a new home? Well then check out Urbanedge Homes. They are the best house builders in Victoria. They are known in building...
Hi All I am new to the group although am aged 59. As we all know APECED frightens off most medicos so a forum like this is helpful. I was wondering whether...
Hi Everyone, Tara went back to the optholmologist after seeing the cornea and retina specialist. He did a field test on both eyes and her right eye perfomed ...
Hi Linda, Â Â I agree with you that another genetic disease is not likely. I will ask Ryan's cornea specialist when we see her next time. I have the email...
Please do post what you find. My cornea in the left eye is getting "cloudy" so they told me and "thick" and my right eye was having issues similar to detached...
Thanks for the quick replies Vicki and Julia. I spoke to Dr. Maclaren today and he said there is no correlation with APCED and Retinitis Pigmentosa. He said he...
Hi Stephen, Welcome to the group. This is a particularly supportive group and I know if anyone had had experience with thrombosis or DVT's they would have...
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....
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