I don't know how much help this will be but my husband has run this same gamut and his doctor had no idea either. We finally started experimenting with...
Hi all, I was just reading about the supplement part - I'm a dietitian in research and actually the quality assurance on Wal Mart's Spring Valley brands are...
... I've had Addison's,Hypoparathyroidism etc. since I was 6 years old. I'm now 37 and have dealt with many of the problems people have in this group. The low...
Hi Dede, We go to the docs tomorrow to find out the latest blood test results, I was wondering if it's due to James's kidneys - but maybe the kidney function...
It seems like this prob it is a bit of a theme for people with APECED. I will have to try out some of the natural remedies you suggested after we have gotten...
Donnie had the same problem with his insulin levels. It really didn't seem to matter what he ate or anything but his readings would be all over the charts....
Hi Everyone, We are still trying to work out all what is going on with James and the calcium prob, but we have a new problem. James's eyesight has been...
Hi Liz, My daughter also has eye involvement with APECED. Her eyes are very dry, her pupils do not constrict properly and she is sensitive to light. We give...
Hi- My daughter Emily (who is 9, almost 10 next month) has light sensitivity as well. In fact the light sensitivity was the first sign we were dealt back when...
Hi, Tara never had light sensitivity but at age 13 we were told she had had undiagnosed uveitis and the earliest stages of cataracts from years of low calcium...
Hi again everyone, Thanks for your replies! It's so good being able to contact other people who are going through the same probs. Jennifer, I definitely...
Hi Liz, I just was reading your post from the weekend. I am 27 now, I had eye involvement around ages 3-5 from undiagnosed extremely low calcium which caused...
... I have been out of town and just read your post. My son recently turned 25 and has APCED, including the eye problem. His started at age 4 with extreme...
... I am curious to know what type of corrective contact lens you wear? Ryan is wearing bandage contacts that don't improve his vision much. We would love to...
Hi Vicki, I'll grab the info tonight when I get home (company etc). They are extended wear soft contacts (very comfortable) - (I wear a pair for one year) and...
Hi Julia, That would be great. I would love to find out about them. Ryan has tried many lens including the Scleral Lens from Boston, which were very very...
Hi Vicki, Here is the information about the company. CooperVision is the company - then I have Options (methafilcon B) lenses. They are hydrasoft contact...
Hi Julia, Thanks so much for the information about the contacts. I am going to call his cornea specialist and ask her about them for Ryan. Take care, Vicki ......
I am new to all of this my 6year old son has aps1,candidiasis,addison,and the new new one hypoparathyroid.It has took us 6 years to find out what is wrong with...
Welcome to our message board. We will all try to help because we all know how difficult it is having a young child with APS 1. First of all where in the US do...
... for a few days then he has diarrhea for a few days he is losing weight and he drinks all the time.Where are you from.We were told they are not many people...
Hi Donna, I live in Australia so I'm definitely not near :-). Just a quick note to say welcome. My husband has APECED - he is 24. I'm glad you found this...
-Thank you Liz for the reply your story is one of the first I found on line you don't know how much it has helped me to read your story.Thank you once again. ...
Hi Donna, Welcome to the group. I live in Toronto, Canada and have a 3 year old with APECED. We have had a scary couple of years with Julia as the doctors...
--Hi Jennifer, When Ethan is not feeling well sunlight hurts his eyes. They told us he has Irithes in his eyes and he has to use drops in them. Donna ... old...
Hi Donna, welcome to our group! My daughter Emily has APECED as well, she is 9, turning 10 at the end of March. I remember the year that all of her symptoms...
Hi, Welcome to this group! It has been an invaluable help to me. I am Julia, 27 years old with APS type I (candidiasis, hypoparathyroidism, human growth...
Donna, I've had Addison's for about 17 years now - it really is one disorder where proper medication can treat quite well. You do have to monitor for what we...
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