Being all so new to this disease, even though one of my 2 nephews has had it for 15 years, I’m not so much looking for answers, more looking for a place that they can go to find support, others who have gone and going through what they are.
Jeffery the youngest of the 2 has been like a son to me, it kills me that I can’t help him or I don’t know what to say to apease him. It seems that the doctors has failed him, he’s discouraged and so am I.
What can we do?
Jack
http://www.members.cox.net/yadhelp1/yadindex.htm
the yad part is youth with addisons, it is a small page but it does have someone on it who is young (teenager) with addisons.
Also nadf (great site for links, articles etc on addison) has a kid pen pal group
http://www.nadf.us/links/penpal.htm
It is frustrating and a story you will see over and over is how people were not diagnosed for such a long time. It seems like the drs want to test for everything in their standard care pocket guide but never think of looking for the zebra. Addisons disease is a “zebra”, considered rare yet the tests to diagnose it are so simple. Getting onto other websites and support groups is the best way to get information and find out if your nephew needs to tweak the treatment and medication he is getting.
There are some great books about “chronic illness” too not that we would get told that is what we have but if you check some of them out of the library there are a few nuggets to coping, dealing with drs etc in them.