Hi to all

[AngelTear]

hi, i'm new to this site. I have severe CAH 21 hydroxylase salt wasting
and in Missouri

[Cheryl]

Hey everyone,
My name is Cheryl. I am returning to BLO after seven years of being 'away'. I am 43 yrs old, live in South Carolina and was diagnosed with Classic CAH (salt wasting). I would like to meet other women who have CAH. If anyone wants to know more about my story feel free to ask. Maybe we can learn from each other.

Peace,
C~

[Kailana]

welcome back to BLO Cheryl

[louisev]

Greetings Cheryl and Angel. I got my diagnosis of 11-beta CAH on December 15 after getting a lot of help from Fraulein Maria and some adults in the Yahoo group, as well as additional help and information here on BLO. My case is not simple, and I am trying to get some further information on how to test for CAIS carrier gene, since it appears I also have symptoms of CAIS. It looks like I could very well have *gulp* both diseases. Let me tell you it is very very tough to get any doctor to take you seriously when you're supposed to be hairy with this disease and you're as hairless as an egg except on the head where it's supposed to be going bald!!

I am potassium-wasting, but am getting a lot of help with that from the drug aldactone (spironolactone). But I am getting some episodes of salt losing if I am not careful with when I take the spiro - it is a potassium-sparing diuretic and it changes my electrolyte balance rather rapidly. That's the problem of 11-beta: it is hard to maintain electrolyte balances.

I have put most of my story of discovering about my CAH and figuring out my diagnosis on my Livejournal weight-loss blog, because I grew desperate for answers when my weight hit 344 pounds: and I could NOT lose weight even with regular exercise and a very low calorie diet. This may be peculiar to the 11-beta because it produces hypervolemia and extreme fluid retention when not treated over a long period of time. I have had CAH all of my life, and have been retaining fluid and concentrating sodium all of that time as well. And I am finally shedding the globe of water and turning bit by bit into a normal size.

I know that 11-beta is much more rare than 21-HO, but CAH has other features that are the same: we have a disease that has to be treated every minute of the day, and affects everything about our bodies and our personal lives... and it is the ruling fact of our existence.