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Interesting thread Aimee. Just wanted to say congratulations on your three years - that's huge. I have LOCAH. Had a horrific childhood and severe PTSD, which one of my endos was convinced caused my LOCAH to be the severity it is. Different story than you - certainly LOCAH isn't nearly as damaging as other forms of CAH. But can say that I self-medicated for my depression and the PTSD for a long time, before I ever saw an endo. Got sober in '89 - will celebrate 16 years this month. No, wouldn't talk about CAH in an AA meeting, but have found people with significant medical issues in AA that I share with outside of the meetings. When my ob/gyn sent me to my first endo in '93 and she said "steroids" I flatly refused thinking I would be breaking my sobriety. It took me another 10 years of worsening symptoms and getting sicker and sicker before I finally relented. At least I know now that I really do NEED the steroids, and that it just isn't an option for me not to take them now.
Your PTSD is from experiences directly related to the symptoms of your CAH, while mine was more from severe childhood abuse. But they have done a lot of studies, mostly with Vietnam vets, that show that people with long-term PTSD have a much higher incidence of adrenal hyperplasia. As far as what I've read, they're not sure which is cause and effect. Not everyone that is exposed to severe trauma gets prolonged PTSD - is it that those of us with adrenal issues to begin with are less apt to be able to handle emotional stress as well? Or is it that the prolonged "flight or fight" response damages the adrenal glands and changes our body chemistry? If I were a medical researcher, that would be the question I'd want to be able to answer. I mean, obviously there is a genetic piece here too, but it can't all be genetic, or my LOCAH would not have gotten worse. Two years ago my DHEAS levels increased tenfold from the previous year and my immune system was shot - I needed the steroids and no longer have a choice in the matter. Genetically, it's not like my DNA changed in that year.
I don't necessarily think everyone with CAH is more prone to depression or substance abuse inherently. I can say that I never was able to talk to another CAH patient until I found this board, and before that I sometimes felt like a big hairy freak. I think that sense of feeling defective can make us more prone to depression and addictions. I felt a lot of self-disgust when I looked in the mirror. Sharing in the stories of others with CAH and LOCAH helped me feel much more OK about my adrenal issues. (Thank you Danny!)
