Re: adrenal hyperplasia
8/19/99 1:24 PM
Ray, I can sympathize with your friend and her frustration only as a parent of a little girl born with CAH. I too have many uncertainties and questions about what her future holds. I probably speak for some other parents on this board when I say we have been frustrated at one time or another by a lack of information or conflicting information. There are things your friend can do about the excess hair, and my sister-in-law, who does not have CAH, has been trying for 20 years to conceive a child but with no success. Infertility is a problem that affects many people, not just CAH people, because not all CAH people are sterile or infertile. In talking to my sister-in-law about her failures to conceive, it is amazing nowadays what doctors can do to help women conceive children. My advice would be for your friend to contact the MAGIC foundation at 1-800-3MAGIC3. They are a national support group that deals with many growth disorders, CAH included. They might be able to help your friend find the right doctors to help her. A GOOD endocrinologist can probably solve some of the issues of excess hair and flat chestedness with hormone therapy. There is a link on the left side of this board to the late onset CAH board. Although your friend has had CAH since birth, and does not have late-onset, many of the women on that message board seem to be dealing with a lot of similar issues as your friend and may be able to help. At least she would have a place to talk to others and know that she is not alone and certainly not a freak. Many of these women have been helped with the right medication and are even married and have children. Please let your friend know that she is not alone, and there is hope and support out there. I thank God every day that I am blessed with my children who have CAH, because I know there are many other diseases, disorders, or aflictions that are far worse than what we deal with. God Bless and feel free to ask any questions of me. I will try to help. Nicole
Nicole
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