Does anybody know of any organizations that provide any kind of help or assistance to persons with rare cases of kidney disorders?

Anyone please feel free to reply,
Michael

------------------
A true friend knows the song to your soul, and sings it back to you when you forget the words.

[This message has been edited by moderator2 (edited 05-13-2002).]

Michael -
I can't answer your question exactly, but the "topic" made me wonder...have you been checked for sarcoidosis? It's an autoimmune disease that can affect any organ in the body. Most people think of it in connection with lung/breathing problems, but I've recently found out that it can cause multiple kidney stones due to its effect on the way the body processes calcium.

My cousin had had a lot of kidney stones for the past 4-5 years, and was only diagnosed with sarcoidosis recently...and finally found out that it had been causing the problems with the kidney stones.

Not to scare you, but it's better to know sooner than later with sarcoidosis...it can be treated with prednisone, which usually stops the flare up and sometimes stops the illness entirely.

When I had my one kidney stone removed about a year and a half ago, the nurse told me she knew of someone that had many stones like you refer to. They found out afterwards, that he was taking too many Vitamin C supplements, many many times the daily recommended amount. I can't remember exactly, but I thought it was something extremely high, like 10 to 100 times (if that is possible).

If you are taking excessive Vitamin C supplements, you might want to research this, and talk about it with your doctor. I'm not an expert on this, I'm just passing on something I remember the nurse telling me, in case that it might help.

I do not use Vitiman C pills, but you're right. I have heard of that too.