Hi all,

I've been lurking on this list for a couple of months now, having found out
about it while I was searching the internet for "what's new" on CAH. I've
debated whether to write this post, as I don't want to offend anyone. But I
thought maybe my own experience would help others, so here goes.

I've lived with CAH for 43 years (though not diagnosed until age 4) now. I
am somewhat dismayed that some folks apparently see me (and others with CAH)
as the victims of some terrible disease. I find this very upsetting.

I am not a victim of CAH. My CAH is simply this: a fairly unique medical
condition that is relatively easy to manage. Granted, I do not have the the
most severe form of CAH (when I was diagnosed, they called it V. - for
virilizing - adrenal hyperplasia. The term, CAH, was unknown then.), but I
did have one minor surgery and had to have check-ups every 3 - 6 months
until I was 18. There was one week of hospitalization at age 4, when they
did 6 days of urine collection to confirm the diagnosis - keep in mind that
this was a newly identified condition in 1961 and back then, there was no
blood-test to monitor cortisol, etc. - it was done with a 24 hour urine
sample. For years after, we did a 24 hour urine collection 4 times a year -
what a pain in the patooty that was! I know my initial diagnosis was
upsetting to my parents, although once they understood what we were dealing
with, we all became very matter-of-fact about it. Knowledge is power.

The biggest scare for my parents was the risk of my getting the "hard
measles". The doctor said that if I did, it would be fatal. Because of this,
the school was put on alert to call my mother if any kid came down with the
hard measles, and I would have to go get a shot of gamma globulin. Finally,
when I was 5 or 6 I think, the first commercial measles vaccine became
available on an experimental basis. I was one of the first to get it, before
it was available to the general public. After that, I remember fretting on
the way to my check-ups that I might have to get a shot - since the
vaccinations had been given in a series of 3. I remember that as the most
upsetting part as I didn't much like those shots! :-) But I have no fear of
needles now. I still don't like injections (who does?) but it's no major
trauma when I have to have one. (Now, having dental work is a whole 'nother
story. I'm such a weenie about that stuff! LOL!)

As a teenager, I had to have my wrists x-rayed once a year to check the
progress of my growth plates. The tip-off to my condition had been that I
was growing *so* rapidly. The pediatrican would have caught it sooner,
except that my parents are quite tall. So for several years, the object of
the game was to normalize my growth rate and delay closure of the growth
plates (not to mention delaying puberty). I turned out to be of very average
height - around 5'5".

The biggest annoyance that I remember was the trouble they had in finding
the right dose of cortisone to regulate my period - turns out "2 in the
morning, 1 at night" did the trick. They had just discovered that it was
just as much about timing as dosage. In short, I guess I "went through" a
lot too, but I don't have any terrible, traumatic memories of it. The doctor
(Lytt Gardner, at Upstate Medical Center, now SUNY Health-Science Center I
think, in Syracuse) was a kind teddy-bear of a man, and I have very fond
memories of him. He never felt sorry for me, never treated me as a victim. I
simply had a medical condition that had to be dealt with, and this one was -
as compared to any number of other conditions - a piece of cake. As far as
I'm concerned, on the List of Bad Things, this one is waaaaaaay down near
the bottom. For example, I'd much rather have CAH than diabetes. Would I
rather have no medical condition at all? Yeah, sure. But this one is such a
non-issue, especially now that I'm an adult, that I never even give it much
thought. Taking cortisone twice a day is so routine now, that sometimes I
forget whether I've taken it!

Certainly, not everyone's story is going to be the same and I know that
those with the more severe salt-wasting form will have more on their plates.
It's not my intent to minimize anyone's condition. But consider the flip
side of the coin: the doctor told my parents that kids with CAH always are
very bright, and do very well in school. The majority of them also have some
sort of outstanding talent - music, art, etc. One prediction that did not
come true was that I might not be able to learn to drive a car - I guess
they felt that CAH's can have coordination problems that might prevent this.
Hogwash. I've been driving since I was 18, and the only two accidents I've
been in have been the other guy's fault. It did take me awhile to learn to
ride a bike, and my gym teachers would have told you that I was no athlete.
But who cares? I could draw better than any of them. My fine motor skills
are just dandy, thank you very much - one look at my detailed artwork should
convince anyone of that. Each according to his gifts, as they say. In fact,
if not having CAH would have meant not having my art - well, then I'll
gladly take the CAH!

This is just my personal opinion of course, but there is so much more to a
quality life than CAH. I'm so lucky that my parents and the doctor were as
wise as they were. I was never made to feel weird, or inferior or different
due to my CAH. It was just one of those things...and it has remained so.

One point - I *am* an only child but it was not due to my mother's fear of
CAH. She, unfortunately, has a platelet (clotting) problem and when I was
born in 1957 they almost lost her. Only a direct transfusion saved her. The
doctor advised that she should consider not having any more children because
of this. But I asked her if my CAH would have deterred her from having other
children and she said no - because it's a condition that's so easily (again,
relatively speaking) managed. Of course, everyone has the right to decide
how many kids they want to have - but based on my personal experience with
this condition, CAH should be a very minor - if that - consideration in that
decision. I suppose it comes down to whether one sees the CAH glass as
half-full or half-empty.

I apologize in advance if I've offended anyone with this post - that was not
my intention. It's just that I seem to be one of the few people on this list
who actually has the condition (most of "youse guys" seem to parents of
children diagnosed with CAH :-) and I just wanted to let you know - it's
not, and never was, such a terrible ordeal.

Kathy P.
Goldens Portrayed <http://www.partridgeart.com>
Up in central New York (Zone 4)