Living with CAH?

Question

Curious if anyone on here was born with congenital adrenal hyperplasia- doctors believe my daughter will be born soon with this condition and am wondering what the quality of life is for those living with this and managing it with medications. Do you notice any changes to your appearance long term after taking the medications? Any thoughts or advice on parenting a child with this condition? Thanks.

Answer

My gf has SWCAH she was born with, it can be controlled with medication. She has had multiple surgeries in her life time. When she was finally of age she had enough, she spent her whole life with drs she never had a normal childhood. She hasn’t taken her medication since she was 16. Depending on the cah if it’s normal or salt wasting, salt wasting is the more severe lethal option of CAH with salt CAH you have to stay on top of the salt, your body doesn’t produce salt, my girlfriend brings a bottle of salt water with her when she’s at work, at home she likes to eat the beer salts since there easier for her to stomach, there will be appearance differences, for instance once puberty hits, there’s a high possibility that she will have high levels of testosterone, it can be treated depending on the severity, my gf has high levels after injections and injections multiple medications and doing everything for her they can, she will just have to live with high testosterone they cannot get her numbers down. She does grow facial hair, she hates her condition she hates she has to live with it. I believe that makes her who she is, she’s stronger for it, she has appearance issues, she doesn’t like her body because of her condition and can never fully love herself. That’s okay, I got plenty of love for the both of us! I will always be there for her through this medical condition building her up. Be prepared to know, there is a possibility her voice will deepen once puberty hits, she will also grow to be a little manly, her body build will be structured towards a man’s…she may also not be able to bare children, or have a normal sex life. It’s a lot when it comes to this condition, it’s also a lot to take in. It is treatable that’s the main thing. I hope the best of luck to you and your baby girl!!

Living with CAH?

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