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re: re: re: re: re: were going to have surgury Mar. 12th, 2007 7:12am
If I may weight in on the general topic... I was diagnosed at age 2, had surgery shortly thereafter, and have had minor bumps along the way with medications, health care professionals both wonderful and idiotic, and the dreaded intimacy issues. My parents raised me just like my two older (non-CAH) siblings and I turned out fine for it. I slept over at friends' houses, went to Girl Scout camp, and moved out at age 18 to go to college. I never carried an injection kit with me during that time (although the camp nurse did have it, along with emergency instructions, and I take it with me when I travel now) because I was always just a phone call away from my parents. If something had happened at a friend's house, they would have called my parents right away, who would have been there immediately with an injection had I needed it. You don't have to wrap your child in cotton - she'll be fine, I promise. It doesn't make the kids making fun of her aspect any easier, but as I said, I had the surgery as a child (with no regrets) and they still found plenty to make fun of me about - sometimes it's just part of being a preteen girl.
I found out as a teenager that my mother blamed herself for me getting CAH. I think I've finally convinced her that it's all right. Yes, having CAH can be a royal pain in the rear (being medication dependent, weight issues, having to explain my condition to any non-endo doctor I meet, worrying about future fertility issues), but I wouldn't go back in time and prevent it if I could. It's part of who I am, but it does not define me. Don't let it define who your daughter is either. Best of luck to you both.
