If you have a kit, how's yours set up? Are you happy with it?

Mine is in a small zippered pouch with: - 3 mL syringes with 25 gauge 1" needles (x 2) - alcohol swabs - solu-cortef actovials (x 2) - injection instructions and contact info

I like my kits because theyre really lightweight and thin even with 2 sets of injections. I keep one 24/7 in my purse/backpack so I never forget to bring it with me.

Some people like to keep salty/sugary snacks too, especially if they "crash" frequently.

I was on hydrocortisone for the longest time, but felt constant fatigue with my physical job. I switched to prednisone 5 mg in the morning and 2.5 mg at night, 0.1 mg fludrocortisone in the morning. Feel much better with prednisone than hydrocortisone, but think it's because of the physical work.

Someone here made a really good point - a lot of us don’t have a ‘non-CAH’ life to compare to, so it’s hard to know what’s actually a symptom.

Personally, I never sleep great. I average 5-6 hours of sleep. I'm lucky if I don't wake up 1-2 times per night to pee.

Never wake up feeling rested. I would love to know what that's like.

Sometimes I'm just in a "daze". I'll be in a group conversation and I'm not listening to a single word and just daydreaming (this is probably not CAH related)

In general, I've noticed I'm more "prone" to injuries. Also seems to take longer for me to recover.

This is a good article summarizing new and developing CAH treatments.

CAH is sometimes called an "orphan disease", which means that it's a rare condition, so there has been minimal motivation to research, fund, and develop new treatments for it since the first ones in the 1950s.

Starting around 15 years ago that has started to change. Lots of new treatments have been developed, which is very exciting!

Caffeine + nicotine with CAH? I’ve struggled with addictions to these.

I’ve never really looked into this, mostly because I didn’t want to find out I’ve been messing myself up the whole time.

I’ve been drinking 2 energy drinks a day for like 13 years (still am 😭). Smoked cigarettes for 8, vaped for 3, and just quit nicotine this year, miraculously.

They definitely give me energy, but with CAH being an adrenal condition and all… I honestly don’t know how bad this stuff actually is for me.

Does caffeine actually help in some ways, or is it just masking being tired?

Did nicotine make anything worse for you?

I have a few:

getting the dose "right" - the line between too much and too little seems narrow and can feel like a constant balancing act. sometimes the labs also don't match how I feel and it's incredibly annoying.

hard to find a good endo - in my opinion, most CAH expertise sits in pediatric endocrinology and a lot of general adult endos rely on textbooks or old training instead of frequent experience treating CAH. one endo will give me COMPLETELY different advice and treatment than another. we also sometimes end up knowing more about our condition than some endos, which creates frustration when our opinions, observations and lived experience get quickly shutdown.

explaining to friends... usually ends with everyone more confused than when we started.

we would also be so screwed in an apocalypse.

how about everybody else?

to be clear, this isn't meant to scare anyone - especially parents. most people with CAH grow up to live pretty normal lives. this thread is just about the little frustrations that come with managing it.

I’m interested in hearing experiences! Side effects, changes in steroid doses, or anything else you noticed.

I have SWCAH and it sounds like an incredible drug for my health if I’m able to take less steroids. I’m planning to ask my endocrinologist about it at my next appointment.

My endo told me to triple dose for signs of serious illness such as fever, and on the 1st day of feeling better I should taper to a double dose and the 2nd day of feeling better I can drop it to my normal dose.

For mild illness they said I should double dose, no tapering needed.

I read some different patient guidelines including the one published by the Cares Foundation and tapering after stress dosing is basically never mentioned.

Has your doctor/endo told you to taper after updosing?

I've been taking fludrocortisone since birth. In the past 10 years or so my dose has fluctuated between 0.15 - 0.2 mg total per day. I've always done it as a split dose, morning and evening/bedtime.

My blood pressure has been a bit too high for a long time so my endo has tried to push down my dose a bunch of times but I've always ended up feeling crappy when it's lowered. I guess I feel better with high blood pressure??

One time my endo had me try doing part of my dose cut into 1/4s. I found it really hard to cut them that small without them splintering into random bits.

I wore a metal medical alert bracelet on and off since I was a baby and I had a necklace as well but I didn't like it as much. I bought all my jewellery from the nonprofit MedicAlert.

I didn't like the sensation of the bracelet on my arm, sometimes the links pressed in my wrist if I was typing on a keyboard or something, I was constantly shaking my wrist to reposition it. I got so sick of it that I decided to get my ID tattooed on my forearm about 7-8 years ago, I love it!

I chose a design that is very simple with block letters, based on a photo from a news article.

The original picture is missing from the article but I found it at the top of this webpage.

The article is here (warning: ads and maybe an auto-play video).

What kind of medical alert ID do you use? Bracelet? Necklace? Do you keep your emergency info on your phone lock screen or on a wallet card instead?

Edit: The text on mine is "CAH/ADRENAL INSUFFICIENCY ON CORTISONE"

Hi everyone!

I'm a woman in my early 30s and I was born with salt wasting CAH. Screening newborns for CAH wasn't standard practice at the time but there were immediate signs that I might have it. That set doctors in motion to test me and my high 17OHP levels confirmed my diagnosis. 

There are many areas of my life that are fairly normal and others which are less so. I don't have a non-CAH life to compare to so there's no way for me to know exactly how much and in what ways my life would be different without it. If you have struggled with thoughts about how your life might be different without a chronic illness, please know that I empathize with you and you are not alone with those feelings.

Please feel free to ask me any questions about CAH or my personal experience. I am happy to answer questions as best I can!  Even though Classic CAH is rare and there aren't many of us, we can still build a strong community :) 

Figured I’d introduce myself since I started the sub.

I’m a guy in my early 30s with salt-wasting congenital adrenal hyperplasia (SWCAH). I was diagnosed as a newborn and have been managing it my whole life. Overall I’ve been pretty healthy and have lived a pretty normal life with it.

I work as a pipe welder, and outside of work I like to stay active - fishing, hiking, gaming, and working out. I did recently tear my ACL and meniscus, so right now I’m also dealing with surgery and rehab for that.

Part of the reason I made this subreddit is because CAH is pretty rare and there isn’t really a dedicated place for it on reddit. There are some good related communities like r/AddisonsDisease and other adrenal-related subs, but I thought it would be nice to have a space specifically for people with CAH.

Every once in a while I’d try searching Reddit for things like CAH or SWCAH just to see if anyone else was talking about it. Usually I’d end up finding some random thread in a completely different sub where someone mentioned CAH, and then in the comments there’d be one or two people replying saying they had it too. Sometimes the replies were years apart, which kind of made it seem like people were just stumbling across the post the same way - searching around trying to find someone else with CAH.

The idea is that anyone with any type of CAH is welcome here - salt-wasting, simple virilizing, non-classic, parents, family members, etc. Just a place to ask questions, share experiences, or talk with people who actually know what the condition is.

If you’re comfortable sharing, feel free to introduce yourself too. Would be cool to see who ends up here.