My experience of living and coping with CAH

As a female with salt-wasting CAH, growing up was quite traumatic. My parents knew very little, as doctors had simply told them I would need steroid replacement for life in order to stay alive and that they could 'fix me surgically' for the genital ambiguity. While doctors were allowed to examine, poke and prod intimate parts of my body, no explanation was given to me other than 'Take the tablets, have the surgery, don't ask questions, don't tell anyone anything and don't touch, everything will be OK.' In reality it has been far from OK. I became very shy and withdrawn. While my peers always seemed to have lots of friends, went out and so on, I stayed in, had few friends and felt unable to talk to them. I was forever in and out of hospital and had endless hospital visits for check-ups. The surgery was very traumatic.

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