Marie,

Sorry but I don’t know about LOCAH but the CARES FOUNDATION can help with those answers.

The lack of bone density is from someone taking cortisones their whole life so I imagine that it would be the same for someone with LOCAH that was diagnosed in childhood. Are you the lady that was diagnosed with LOCAH in her 40’s ?  

Another way that I look at this bone density loss is that there is a very good chance that I would have osteopenia now anyway regardless of the cortisone but taking the cortisone has made me much more aware of the condition. I know of one person with CAH around my age that doesn’t have bone density loss but I also know seven people with CAH that either have osteopenia or osteoporosis. As for height issues, I’m 5’1" and my bio- mother and father were 5’ 5" and 5’6" respectively. My weight is anywhere between 125 and 179. This depends on what I eat and how active I am. Sure if your over-supressed but that is another thing all together but it isn’t always the fault of the cortisone. I believe that sometimes over-supression is needed at times when someone is younger to help get the CAH under control but I could be mistaken about that. When it all comes down to it, we need the cortisones and the side effects to me are worth it because the hydrocortisone make my life normal (haaaa,whatever that is ) and if I have to take another little pill (actonel) to help me well then so be it. The cortisones aren’t perfect (hydro,pred, dex) they need help too! just like me. My Endo told me that "if you frature your left hip, you’re screwed!" An Endo that really got my attention in away that drove it home and it’s about time that I Have one that informs me about the seriousness of my condition. I’m fond of him : ) I think about all those times when I fell off of horses and what might of happened. It wouldn’t of stopped me from riding though because you must live life.

Happy Trails,

Aimee