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re: re: The good, the bad and the ugly Feb. 26th, 2006 4:04am
My general feelings about CAH is that doctors should read up on the side effects of both the disease and the drugs such as Prednisone and Flourinef. I think that if they took the time to interview patients with CAH and looked at the overall picture of the struggles especially with children who have with this disease we would get lot more respect. I had to fight really hard to get Family Medical Leave coverage at my job because my primary care physician simply didn't know that Addison's disease causes mild to severe fatigue. I did however get the coverage and I use it when I just simply don't have the strength to go to work. I would like to see more publications of people's personal experience with CAH and let the world know what we go through. I understand that some people may or may not have as much trouble as I do. I have the rare kind of CAH the 17 hydroxilase hormone deficiency. I was born in 1981 and it was really a miracle that my pediatrician discovered my complication. I would like to see a book published on CAH that covers everything from what the disease is, the different variations of the disease, who it effects children, how it effects adults, medications used and complication of the medications, the genetic explanation of the disease and how parents can be aware and the odds of their children getting the disease. As well as personal testimonials and clinical studies. I would like to see information about CAH publicized and brought to media attention. Also I would like to see seminars to educate health professionals on how to treat and diagnose the disease. Overall I believe that information and the transmision of information to the public and to health care professionals is the way to change everything. I know that I would be willing to be a voice in this matter. And I believe that the more voices speaking will equal more people listening.
