Hi, I was wondering if there is a forum for partners and spouses of folks with CAH? Most of what I find on the Internet deals with childhood issues and being a caregiver from a parent's perspective.
I am with someone that was one of the first generations to survive infancy with CAH and she was literally a textbook case at one point in time. Finding information about longterm effects of the treatments that were used in the 60's and beyond are hard to find.
It is hard to start to understand all the signs and indicators that something is wrong when you come to it as an adult entering a relationship. After 7 years I have finally reached a point when I can make suggestions and see the warning signs to prevent the crash from happening. I have also gotten to the point where I can hear it in her voice. I was always amazed at her mom and how she could diagnose her daughter on the phone without ever seeing her, simply by how she sounded. I would then get on the phone and she would tell me all the things I needed to watch for and how bad it was at the time.
If you know of a forum for folks like me, please pass it along.
