What is Addisons Disease
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It...
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Hello,
My name is Sharon and i found this group by accident. I was looking up something else and came across the Addison's disease support group. I have never been diagnosed with the disease but my aunt Joanne had it. She had been suffering with it since her mid twenties. I've seen her become really sick and then get better. She did pass away two years ago at the age of 51 but the cause was not from addisons disease although she was sick at the time. They think she had infection. She would take her medication everyday for about 30 years and if she didn't she would wind up in the hospital. I never knew anyone in my life to have addison's disease and im in my 30's except my aunt, so when i found this site i got interested in learning about it and to meet others who have it. I'm not sure how much my aunt knew about the disease, but i wanted to find out more in her memory. My goal is to write a book someday about my aunt and my grandma who just passed away recently so that i could keep their memories alive. My aunt was such a loving, energetic person who had so much to give, but for the first 30 years of her life it debilated her life. She would spend weeks at a time with no energy and couldn't get out of bed. Somedays i would call her and she didn't want to talk because she was too tired. Anyways i don't want to bore anyone, but i wanted to write this group to find out a little more about addison's disease. If i ever do write a book i would love to give a percentage of the sales to more research on this disease. It might have given her a better life. Sharon Posted on 09/17/09, 02:09 am |
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I recommend you start with these two sites http://www.addisons.org.uk/info/ma... and http://www.nadf.us/diseases/addisons.htm. Most of us deal with academic knowledge of the disease and actually understanding how our bodies function to live with the disease.
I applaud your effort. It is difficult to get family, friends and coworkers to understand the impact of this disease. 
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I agree with cokecpl. I too suffered many yrs at first with no clue what was happeneing. I'd work, be ok, and then flat on my back. Missed so many things. I'd push myself until I couldn't anymore. Was put on disability 3 times. But till it went through, I'd begun feeling better and back to work. When I finally did need the help it wasn't easy getting it. :) haha And actually am praying to get to the bottom and treated right so I can work again. ) But I was diagnosed,changed health ins, and then treated by another dr who claimed it was CFS and fibromyalgia. but would be hospitalized with many illnesses. (records say adrenal crisis ) When on prednisone for infection, mostly respitory, I'd feel much better. Now again after another 10 yrs, was diagnosed. It's a long story, and I'm guilty of going on and on. But I understand her life. I wish it were easier to diagnose, so many people didn't go thru yrs of heartache, and frustration. Every Sat on the front sports pg I see my Grandson. He's excellent in sports. In high school now. But I've not been able to ever go and see him play. Not for yrs. I know that sounds stupid, but so true. many people on here I see are working, and exercising. I have no clue why I'm the way I am. it would go from ok to horrible, and started over 25 yrs ago Each time worse. Something finally gave out, I no longer feel good. When his Mom and my son divorced, he my son, was in kosovo actually, but I wasn't able to see my g-son., His Mom forbid it saying I never bothered, so not to bother now. And in a way she's right. I didn't do the things with my grandkids that I should have, or would have liked to. I hope some day he understands.
it's really great that you're even taking the time. And understand. Coke's right, so many don't. And really don't care to learn. good luck on your research!
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