If you just looked at me, you probably wouldn't be able to guess I have a condition that affects 1 in 10,000 to 1 in 20,000 births a year. Hell I didnt know anyone with this same condition until just this past June of 2026. What is this condition? It's called Congenital Adrenal Hyperplasia (CAH). I was born with it. It is a mutation of the CYP21A2 gene, which means I do not produce cortisol, which leads my body to asking for more cortisol, not getting it, and then going into overdrive. It's super fun.
You might be wondering what cortisol is? It's the stress hormone. Cortisol is a hormone your adrenal glands are supposed to make, and it does a lot of quiet, unglamorous work such as regulating blood sugar, managing stress response, keeping inflammation in check, all that fun stuff. My body doesn't make it, so my brain just keeps yelling at my adrenal glands to make more and instead of cortisol I end up with a surplus of hormones I really didn't order. That's the "hyperplasia" part of CAH, my adrenal glands enlarging from being told to work overtime for a job they physically can't do. And when that system gets pushed past what it can handle, like it did for me at birth, you get an adrenal crisis: basically your body running on empty with no cortisol to fall back on, which is exactly as dangerous as it sounds.
When I was born, I basically was in an adrenal crisis from day 1. Being that I was born in Germany on an American military base, the American doctors apparently had a hard time figuring it all out. It was the German doctors at a hospital called Stadt Klinik in Fulda that figured it all out and got me on the right stuff. Now I'm here, 39+ years later, still listening to the same music I listened to in high school.
To manage this I see an endocrinologist every year. Currently he calls me boring and I call that a win. I take two steroids to replace the hormones my busted ass adrenal glands can't produce. Since I've had to take some sort of steroid since I was born, this most likely contributed to my less than average height. Boy howdy was that fun in high school.
I'm writing this because of what happened earlier this year. Growing up, I never sought out support groups or other people with this condition. I never saw it as a limiting thing, so I never assumed that others would feel different, nor did I realize how rare of a condition this was. I wasn't aware of support groups because other than being short there wasn't much support I needed. We had a good endocrinologist, and minus getting sick every so often as long as I took my medicine things were "normal".
In June of this year, I hopped on Instagram (idk why) and saw a friend posted that it was Congenital Adrenal Hyperplasia Awareness Month. I stared for a moment not believing that a: this dumb condition has a month and b: someone relatively close to me was in some way affected by the same condition. Turns out his newborn son has the condition and the first few months of his life were just as hard as mine were. After months of being in the darkness about the correct course of action, probably tons of sleepless nights caring for their son, a doctor threw out CAH as an option and told the parents to get to Vanderbilt immediately. Once they got to Vanderbilt and connected with an endocrinologist, their son stabilized and celebrated their first birthday this year!
I left a comment, in my usual way, saying "oh thats wild. I have CAH and didn't even know this [the awareness month] was a thing". He quickly DM'd me and even through the screen there was a sense of relief that he found an adult with this condition. Unfortunately for him, that adult is me, but you know what they say: you can't pick your heroes. I relayed to him my experiences growing up with this condition, what current life is like, and how I manage things. He had a lot of questions, and I think I was mostly able to assuage some of those fears of the unknown they had.
I've come to recognize that far more people carry this condition than I ever gave it credit for. It has made me feel a little bad about never looking for myself, never wondering if anyone else deals with this. I just assumed my endocrinologist knows what's up and guides me on a path. That is true, he is great, but I also realized that since this is such a rare condition, it could mean the world to someone else to hear that someone like myself is an adult with this condition.
I found a reddit community too, and look forward to actively contributing there to hopefully give others my experiences as they navigate this condition.
I'm getting ready to fly up to the Mayo Clinic next week to be enrolled in a study for adults with CAH. I get a free Oura ring in exchange for Mayo getting 3 years of my health data. That seems more than fair. I know whatever they learn about this condition from me wearing the Oura ring wont do much for me, but if it helps the little dude who just celebrated his first birthday then it makes everything worth it.
I wrote this because I realize that there are others out there either as adults who aren't aware of others with this condition and as parents with newborns who may have this condition. It's not a condition that people just talk about openly, so Im trying to be a bit different. Maybe this post finds those parents and gives them some comfort that their kid will be fine, albeit short in height (short kings unite), but will lead a mostly normal life and it will all be ok.
If you or someone you know are in this position, don't hesitate to reach out. It really is going to be ok.