Dear K.,
Let me introduce myself. My name is Angela Strong and I have identical
twin girls, age 12 1/2, with the severe salt-wasting form of CAH. They were
born with ambiguous genitalia and have undergone two surgeries, a
clitoroplasty and vaginoplasty. I'm sure you have come across both these
terms....I'll spare you a long explanation of both. They are both being
treated with florinef and cortef, and of course, salt. When my girls were
born, the doctors were testing a newborn screening process to diagnose all
sorts of genetic conditions. The doctor actually thanked me for helping her
numbers look so good....she was quite a character! LOL! Anyway, before the
screening process was mandatory, girls were diagnosed because of the
virilization for the most part. Many of the boys were not diagnosed, having
no outward physical symptoms. They would simply go into an adrenal crisis
and sadly, many would die from it and it was called "crib death". This is
why many CAH parents feel very strongly about the newborn screening
processes being made mandatory.
Without taking the medications, my girls would never have survived the
first few months of life. If they were to stop taking them now, they would
suffer an adrenal crisis and die. (Quite dramatic, eh?) We have been very
fortunate and only hospitalized for "mild crisis's" such as the flu and
dehydration. A crisis is very severe and frightening to a parent and most
of us carry supplies to deal with such a situation (a cortisol shot we would
administer at the first sign of a crisis). Anyway, without trying to sound
terribly negative, I don't believe your story is "possible". I have heard
of hermaphrodites with such a situation, but it doesn't really involve CAH.
Maybe your story could take that direction?
There is a wonderful book you could search for (it is available on the
internet, but I've lost the site). "Your child with Congenital Adrenal
Hyperplasia" by G.L. Warne. It explains CAH in very simple terminology. I
use it for grandparents and aunts and uncles who are terribly curious. It
could be very helpful to your research. Anyway, if you have any specific
questions, I'd be more than happy to help, or post to my group. Thank you
for taking the time to ask questions and do some research on this subject.
Please let us know when your book is published!

Angela Strong

----- Original Message -----

From: "K Dorian" <kdorian@...>
To: <CAHsupport-owner@yahoogroups.com>
Sent: Sunday, January 06, 2002 3:08 AM
Subject: Research on CAH for fictional story


> Dear List Owner:
>
> I am writing because I am searching for information on
> CAH. Please allow me to apologize in advance if either
> my terminology or the basic premise of my story is
> inadvertently offensive.
>
> I am an amateur writer, and am considering writing a
> short fiction story about an individual with classic
> CAH. Before I do so, however, I want to make sure I
> have my facts correct. I have visited dozens of web
> sites with information on CAH, but the information is
> frequently contradictory, leaving me very confused.
>
> Specifically, and assuming I have my facts correct (I
> am still in the research stage), my story would be
> about a female with Classic CAH who was mis-diagnosed
> and raised as a male, and who discovers in "his" late
> teens or very early 20s that "he" is actually a
> female.
>
> Obviously, there are a number of factors that would
> make this scenario impossible, so the basic outline of
> the story may change. For example, some sites seem to
> link female genital ambiguity with the salt-losing
> variant; if this is correct, I would imagine it would
> be very unlikely for a child so misidentified to
> remain so and survive. Other sites link it to the
> non-salt losing variant, and one site even
> contradicted itself in successive paragraphs.
>
> I am also looking for information on living with
> classic CAH. Is taking cortisone the only long-term
> necessity? How common or rare is it to have an adrenal
> crisis? I am certain there are other questions I
> should be asking, but I'm not sure at this point what
> they are.
>
> Do you know of anywhere I can get this information?
> Would you be willing to either post an information
> request for me, or allow me to post such a request,
> with the CAH Support group at Yahoo?
>
> Thank you for your time.
>
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