To all my friends I wish you the happiest of holidays as we start the year 2008. I hope and pray you will all have a wondeful new year as together we operate...
Thanks, Linda for your good wishes for the coming year. I too hope and pray for better health and treatments for our children and friends. Have a very Happy...
Merry Christmas & a Happy New Year to Everyone from our family as well! I too hope 2008 brings new information on APECED and improved health for all of...
HI friends, I've been having some rather disturbing GI symptoms lately and am getting frustrated that I can't seem to get in contact with my GI doctor - I have...
Hi Julia, Do you have Addison's disease by chance? If so, that can play a factor in GI issues if for some reason it is not managing well with the meds. You...
Yeah, I've had Addison's since I was about 11 (27 now) - I don't think it's related, although you are right, that abdominal problems accompany an Addison's...
Julia, what you describe is yeast in your stomach. People talk about this from time to time on this list serve. I just tried to do a quick google search for...
Julia, what you describe is yeast in your stomach. People talk about this from time to time on this list serve. I just tried to do a quick google search for...
Yeah, I'm thinking you're right - I've actually had yeast in my stomach before and now that I think about it, it is very familiar - I've never had the lower GI...
Hello everyone, I haven't posted in a long time. My daughter, also a Julia (3 yrs) has spent almost a year in hospital. She has had a terrible time with...
Hi Julia, Tara has been having very severe episodes of malabsorption since she was 26. She has had many diagnoses inclusing the PA, Fat malabsorption, lack of...
Linda, Thanks for the information. I am heading to my gastroenterologist tomorrow and will tell her that another person with my similiar conditions of APS has...
Hi Linda, I am so sorry to hear about Tara's difficulties. It rings so true with me as I have watched my 3 year old go through a year of pneumonias, weight...
Hi Jennifer, What type of steroid was used with Julia to suppress the immune system? Tara has been on Imuran for the autoimmune hepatitis and it made her...
Hi Linda, Julia has been on 1mg per kilo of prednisone for the last month. It is a good drug for the short term, but not for the long term. Julia was not well...
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...
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