Wan,

Kiddo - you’re not really getting this.

Hon, this message board doesn’t replace medical advice but rather used to inhance communication about issues with CAH that the patient can then run across the Endo with.  I might see something on here and bring it up to the Endo which his hotself might go No, Aimee or Yes, Aimee - let’s look into this and let me think.

Many medical consumers these days are much more educated and my endo for one likes that. I showed him the packet from the http://www.caresfoundation.org and he liked that. We ask here and support each other but also run it by the endo.

I had cancer and 7 dcotrs laughed at me and stated be a good girl that this was only anemia but it wasn’t and it was cancer. If I had researched/talked more instead of just letting the doctors handle it ? then maybe it would of been picked up sooner. If I hadn’t fainted? they never would of found it and I wouyld of been dead. So, yes- I’m going to look for things of the internet and talk with different people - Mind you this isn’t to disregard doctors but rather to give them all the help they can get in keeping me well. I have a primary care Doc now that recommends for me to look at  medcial things on the net .

Are you judge and jury over others about what they get stressed out about? Doctor in the ER told me that he thought i was going to expire from the anemia because the RBC count was like 5 Doctors told me not to worry about the anemia and it was cancer. I went in to get help with my gall bladder and was turned away - I wasn’t sick enough and they though that it would just get better. A month later i was barfing my inside out neon colors and the nurses told me that they couldn’t believe that i was concious because of the low blood sugar. Who are you to tell me what to worry about? i think you are naive and live in a sweet little bubble and would love to be like you but I was going in for emergency surgery and had the peace of mind to mention that i needed extra cortisone and lucky that I did becuase the OR doc and staff said thank you as they had no idea about CAH and the needed stress dose.

If you want to be an ostrich and keep your head in the sand about CAH then that is you choice and nobody would blame you. Maybe you don’t feel comfortable talking about this condition and it’s interesting that you are here talking like this becuase most women around 30 years old with CAH come to the board to talk about having babies or that they had a kid how their surgery sucked or was fine. You have no concerns ...so what even made you look up the condition? Are you a doctor? how can you say everything will be fine? who knows that because CAH was only found out in the 1950’s amd research is still being gathered.

Why are you bothered that we have a place here to voice our concerns?  

These aren’t general people that talk about this condition either, I have SVCAH but the parents give each other great advice about feeds the infants the salt and other things.