Does anyone else have Congenital Adrenal Hyperplasia? — Scope | Disability forum
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Does anyone else have Congenital Adrenal Hyperplasia?

amber97 Community member Posts: 1 Listener
Hello everyone! My name is Amber and I have Congenital Adrenal Hyperplasia. To simplify, it means my adrenal glands don't work and the treatment is to take steroids for life. My body can't cope with stress/illness and would need a higher dose of prednisolone to treat or in emergencies an injection which would lead to a hospital stay. The condition is a hidden disability so I look completely fine on the outside.

I was born with this illness and coped well when I was younger. I am now 24 and have started to realise the impact of how a long term illness is going to affect my life. I'm constantly anxious as I fear getting ill and my life been disrupted and having to miss work. I've had jobs where employers had no empathy for the time taken off sick and threatened to end my employment if this continued. I'm now in a new job and have recently had to go to the hospital. I'm so worried about having sick days, how it's going to affect my career and how employers will respond to this.

I'm fatigued most days and struggle to work full-time hours. This vicious cycle of getting burnt out and then getting ill and needing time off is really starting to affect my mental health now. I feel quite hopeless and isolated as I've never met/spoken to anyone else with this condition. I was wondering if there was anyone here who has CAH or something similar that would like to talk/give some advice on how to navigate this illness? 

Thank you 


  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hi @amber97 and welcome to the community, thank you for posting. 

    I'm sorry to hear of how your condition has impacted you, it seems as though you are feeling quite alone at the minute and it's totally understandable why you want to find people who have shared experiences. 

    Is it possible for you to reduce your work hours at all? I acknolwedge that you'll likely have bills to pay and such, but I was wondering if that's something you've ever considered as a possibility, to give yourself longer to recover and take care of yourself.

    It's important to take whatever problems you might be facing one by one, and see them as hurdles that you need to overcome bit by bit to make yourself happier, and you'll get there one day I'm sure, it can just take time. 

    Regarding your mental health, have you spoken with your GP about how you feel at the minute to see if they can support you in any way?

    In addition to this community, I'd recommend doing a search for your condition on Facebook, there are normally several groups full of people who have the same condition and will be able to advise further.
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  • Shady9716
    Shady9716 Community member Posts: 1 Listener
    Hey Amber, 

    Hope you are well! I too have CAH. I'm 25, female from the UK and I was just wondering if you were still around (I know your post was a while ago) as I had seen your post and was wondering if you wanted to have a discussion about anything. I work full time, and so was just hoping you managed to find a way to work around the sick days, or if you still work at all, otherwise I was hoping I could offer some help if this is still a struggle for you?

    Do take care 


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