With having CAH, one gets to see how imperfect medicine really is. No doctor ect. wants to out right hurt someone but sometimes they are on the wrong path but are confident they are on the right one and the rest of the doctors jump in the boat with them.

Our number one problem is the lack of sound knowledge about CAH even with the computer screen showing them what to do AND another problem that I’ve encountered that almost killed me is that the medical professional who hasn’t seen CAH and only had a page or so in school will go out of their way to make sure your symtoms aren’t related to the CAH and then cut you loose.

I’ve read my notes " We are confident that patient’s symtoms aren’t related to CAH ...." and that is as far as they have time for. You satisfied their CAH education and what you have isn’t related to CAH so you are good to go. End of investigation- scary for those of us that have more wrong than the CAH.

I think the more education about CAH that we push for then all this will get better and I don’t think this is just CAH but many conditions that just aren’t well known. The hospitals/ local doctors that I go to and they really are Beacons in the night/  Our shining stars but can’t pick up everything. The one thing that is that they do listen but aren’t perfect.

I stumbled for two years because symtoms I was telling them from my gyno cancer didn’t match up with the and I’m sorry to put it this way the crap that are at the end of the medical articles about CAH. Blah..Blah ...the studies say people with CAH experience this so you the patient saying something else- not going to listen or investigate further or what also happened is they chalk it up to CAH when it’s cancer. I’m lucky it was really hot that week and I passed out from dhydration.

 

Trust us ......I trust in that they are intelligent people but the lack of familarity with CAH may do us in. It’s not intentional, they are really proud that when you come in with CAH that they are dealing with it. It’s scary when the cortef doesn’t come right away ... it helps us or when they stay @ some of us are born with ambiguous genitals - I was in an ER and the Doctor after finding my history - joked with me right there with the other doctors that maybe he was a woman ....the other doctors laughed and said lets investigate......I hope that if I have to that certain there w/ adrenal crisis that they will help me with it......I’m scaried- it’s in the computet about CAH & adrenal insuffiency but I always have to ask and inform. My Endo said they get it after the first time - they don’t. Your ER doctor ment well but cortef  "is stronge" it doesn’t hurt us : ) you people that make cortisol well OK maybe not for you guys. I was going in for emergency exploritory surgey for bleeding mass- my endo no privaleges  at that hospital but had a different one on call. Keep telling the nurses needed endo to call in solu-cortef for the surgery- nurse replies ......the OR will know ....I reply no they will not. This went back and forth for awhile ......when I went do to the ER....they told me that they were glad that I SAID something about needing solu-cortef.

Scary but they are all we have.

Shot...bevel up.

Good luck ......My advise is to make nice with them and buy pizzas along with bringing education about CAH.