If I thought of my son as having a disease, it would be truly depressing.  What he has is an inherited condition similar to diabetes, and he will have it for life.  I hope he never sees it as a disease though.  That word is to my mind conjuring up a lot of things medical (i.e. viral illness and terminal illness such as cancer or other illness that may be self inflicted such as lung cancer or heart diease or aids), but I don’t feel it applies to my child.

For the most part he is well---just need supplementation (like vitamins) and the correct dose of such (like vitamins) to live.

I hope that you get the help that you need from adults using the boards.  Have you tried the ones suggested above, as I think they are the only ones available?