re: re: still looking for someone with 17 hydroxylase deficiency
Oct. 18th, 2003   1:10pm

I will give you the basics now. I had 2 hernias at 1yr old and the 2nd one they did exploratory surgery and found no uterus or ovaries, but remnants of gonads that they removed. I had all the normal female outer parts. I do not believe I was diagnosed then because I was not put on cortef and estrogen until the 6th grade. I still made 1 trip a year to children’s hospital in Madison. ( I now live in Washinton state.) I should have been on it sooner as I had high blood pressure, VERY bad nose bleeds in the middle of the night, I was totally exhausted, anemic and many other things.

My Dr.’s have told me this is the rarest  kind of CAH. He said it would be hard to do a study because of it’s rarity and hard to find people.

I am happily married with twins. My husband’s sister carried them. We had an egg donor and my husbands sperm. They are 6 now and in kindergarten.

all for now

kathy
Rare Disease Search Engine, Homeschool Sites, Online Homeschool, Online Income, Ethical Adsense, Creative writing, Family Web Hosting, Christian Radio, Tulsa Parks