- Congenital Adrenal Hyperplasia (CAH)
- Interviews
classi3's interview
How did all start?
at birth
Do you already have a diagnosis? How long did it take you to get it?
yes.. 2 weeks
What has been the most useful thing for you so far?
My mom learning all she could about this enzyme deficiency
What have been your biggest difficulties?
having doctors who didn't know much about my condition, at first being overmedicated, then kept on the top level of meds. This has aided my obesity. At present I am well managed, but still overweight and seem to be constantly hungry. My tendons and connective tissues are fragile at joints. Turning wing nuts can tear a sagittal band in hands. The biggest problem I seem to have is not doing the things I like to do without injury and they are simple things like walking in the woods or just turning a nut with my fingers.
How has your social and family environment reacted? Have your social or family relationships changed?
Having been diagnosed at birth, everything is normal for me. I wasn't allowed to do sports as a child due to having to have a solucortef injection if injured. Someone who understood my condition was always close by, just in case.
What things have you stopped doing?
I don't actually stop, I just expect something else will tear or break.
What do you think about the future?
I am concerned about the covid vaccine. I keep my distance from anyone with even flu symptoms so I'm not really concerned about catching covid, although I do worry about those vaccinated because they may not have strong symptoms and not realize they have it. I am on dexamethasone and no longer have a doctor, he got promoted and no one has stepped up yet. So far I haven't found anyone else on dex with classic CAH. I was told I was the 1st diagnosed in Canada at birth so I am looking for others.
If you had to describe your life in a sentence, what would it be?
Challenging
Finally, what advice would you give to a person in a similar situation?
Read all the information you can, find a doctor that listens and is willing to work with you to find the best treatments for your specific issue. In our area, doctors are in short supply.
