Trying to get in touch with others.

Hello, Whats your diagnosis? I have late onset congenital adrenal hyperplasia I'm currently waiting on new blood work to come through. I had a bad reaction to dexamethasone a few months ago. Now we will see where my levels are in the next few days. I'm anxious to know. I post quite a bit on the forum listed below, there are lots of us there. People get answered almost daily. http://www.congenitaladrenalhyperplasia.org/ ~Amber

Hi Amber, I see you're on here already. I invited the members on http://www.congenitaladrenalhyperplasia.org/ to join, so we should grow over time. Glad to know you are getting close to finding out what's wrong. Hopefully, the blood work will tell everything. Keep us posted. Welcome, Gabs143. I, too, have non-classical congenital adrenal hyperplasia, aka Late-onset. I don't really like to use the name late-onset anymore, simply because I feel it's a misnomer. But it's become accepted in the medical community and also among lay persons. My symptoms began in early childhood -- clearly, not late. If only they had known. Blessings everyone, Suzanne

I agree with you Suzanne, the term late onset is a misnomer, so the term non-classical is more accurate - except that sometimes children who are diagnosed late can be called non-classical, when they are in fact classical simple virilisers. All depends on their diagnostic levels and the presenting symptoms matching as more severe. Gosh it gets complicated! Anyway just to introduce myself I have classical CAH (21-hydroxylase deficiency). Am on Hydrocortisone about 20 - 24 mgs per day (depending if I remember to take the last tablet - naughty). Also on Florinef. Was not originally put on Florinef but had a lot of postural hypotension and very low BP's with elevated plasma renins. Feel so much better on it. Lots more but its late now and need to get some shut-eye! Kind thoughts to all! Syzygy

hi everybody, i wasn't diagnosed until i figured it all out myself and began to demand labs, and was formally diagnosed at age 50 with 11-beta hydroxylase deficiency - that is the hypertensive type of CAH. I only know a couple of other people through a Yahoo group I moderate who have 11-beta, hoping to find others since it's a 'rare' form of a 'rare disease'.

Hey all I originally started this topic on rareshare.org as my son has the salt wasting CAH which was diagnosed at day 12 currently he is now a 3.5 year old and bubbling full of life. :) It's good to see this is coming active do any of you have organisations in your country to meet other families / people with the same condition. In Australia we have CAHSGA (http://www.cah.org.au) which organises at least in brisbane regular meet ups for families to come together

Hi ManiacD, The organization that is most active in the area of CAH in the USA is CARES. I have joined them, and got some help with joining a medical study at the National Institutes of Health on androgen disorders, though I haven't gone in for all of the labwork with them as yet. The problem with CARES is that they actively push for genital surgery and clitoriplasty, which the women I know who were operated on as babies and had their clitoris removed or modified are the most unhappy people alive as a result. So I'm not too thrilled with CARES even though I did not have surgery as a child.

I agree LouiseV, the two or three people I have personally met (not through forums) who have had clitorectomies (complete removal) are very unhappy people. They are quite bitter about what was taken from them without their consent. None of them have ever had any sexual relationships or marriage. Fortunately _clitorectomies_ per se are not done these days which is a great step forward, even though, we may still not be entirely happy with all the current surgical options. It's interesting how we rale against certain African tribes for doing FGM (Female Genital Mutilation) yet it was not that long ago that our surgeons essentially did the same thing in CAH people and some other DSD's - for different reasons of course! Anyway glad ManiacD that you have been able to meet up with other families with CAH. It is a real healing thing I think to know that others are out there with similar struggles and being able to share those experiences. Apart from my CAH sister I had never met another CAH person 'til 2001 and it was absolutely surreal knowing that others did on a daily basis what I had been doing all those years and seeing the similarities and variations in CAH and steroid manifestation. The first time I went to someones home who had CAH and saw the exact same tablets on their kitchen bench that I took was so weird, and an almost 'out of body' experience. Really hard to explain!! I think it comes down to the fact that when I was growing up with CAH there was no internet, no information, no support groups or no exchanging of personal stories like there is now. Meeting others with CAH for me was like a drought had been broken as I was starved for connection. For years I had felt like a freak and felt there was no-one else like me on the planet! All a bit laughable now I realise!!! Anyway on to happier things!

I have non classical CAH (21-hydroxylase deficiency) I fought for several years doctor after doctor diagnosed me with different things. My favorite is the internist who diagnosed me with Anxiety, and told me to take it easy and have some coffee!! A few months later my new Gyn did a pelvic ultrasound. Turns out I have ovarian cysts and PCOS. Sadly the only doc who ever listened to me ended up with breast cancer and can no longer perform in her chose profession. I did find another GYN who listens just as well and did the initial tests which showed abnormal bloods. I was finally relived to get a diagnosis from my Endocrinologist. However, I am only 1 of 2 patients he has with this disease. I see him in a few days and hopefully he will find my labs to still be in good ranges. Good luck everyone. I will be sure to post more.

I hate to use the adjective "Lucky" in your case, CC, but the fact is that the preponderance of information everywhere about CAH is about the 21 hydroxylase form, and it is the one that endocrinologists are most familiar with. I don't know where you are located, but my endo has treated patients with 21 hydroxylase deficiency - he is in Washington DC.

I'm on the Gulf Coast in Alabama. I live in a major port city. Lots of doctors around. Which means you have to poke about to find the good ones. Yeah, lucky.... :) That's me. I'm going to see this endocrinologist one more time. I'd like to find a much younger doctor. This endo is at least 75 and I suspect very ready to retire. I have been assured by 2 of my regular doctors, and one nurse who is a friend that the current Endo is the best in Mobile. We shall see. Right now I'm finding it difficult to explain to other health care professionals that I'm not adrenal insufficient and I don't need a stress dose for something as simple as strep or bronchitis.

So if you believe your 21-hydroxylase deficiency is not severe enough to make you adrenal insufficient, what are you seeking treatment for exactly? THE treatment for CAH is steroid helper therapy, and in the case of salt-wasting, additional help from fludrocortisone which helps conserve sodium.

Hi Everyone, No sad, depressing dialogue on our mutually shared disorder today. Just want to say hello and encourage everyone (myself included) to persevere in our individual struggles. We are all placed on this earth for a purpose and it's the will of God that we discover it. Even the very fact that we have CAH has a much greater purpose beyond what I'm sure we are able to recognize right now, especially during the times when we are going through. Let's all continue to share valuable information and our personal stories that will help each other through our difficult days with CAH, and lead to greater health overall. Blessings All!

Thanks HopeSuzanne for your upbeat contribution! Even though I have classical CAH, these days I feel that it is the least of my worries as I have so much other health stuff going on. Whether CAH has contributed to these other diagnoses I don't know, but I think I am stuck with them for the long haul! Oh well! I do try and keep positive though with a smile on my face, which can fool most of the people most of the time!! Have a great day everyone! Syz

Hi there, iam the mother of CAH child. Right now i have accepted about my child disorder. My son get simple virilisation type. But now i am confused about the drug (hysone), because that drug not available in my country, really difficult to get that drug. Please help me and our group (the name is kahaki) to get that drug.

hi Adeerni, What country are you in? "Hisone" or "Hysone" is a brand name used in India for hydrocortisone sulfate, or simply "hydrocortisone and it should be available everywhere.

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