I am a 59 year old male who was diagnosed with CAH when I was 14. Went through puberty at 8 and reached my full growth (5’4") at about 10. Everyone called me giant when I was kid and by high school graduation I was the second or third shortest kid in the class. My sister (50) was diagnosed at age 5 and is 4’10". My other sister, aged 57, does not have CAH.

My sister and I have been taking cortisone, now prednisone, for all these years. We both have been diagnosed with steroid induced osteoporosis and are taking Actonel and calcium + vitamin D.

Neither of us has had a weight problem nor are we particularly hairy.

My youngest sister had ambiguous genitalia (nothing more than an enlorged clitoris) but in 1950 there was little known about CAH and the family gp at the time dind’t have a clue. When my parents were finally sent to Dr. Virginia Esselborn in Cincinnati we were fortunate that she was doing pioneer work in the area. She had my other sister an me tested and we began the cortisone treatment. Without the treatment she probably would be even shorter than she is.

I read in another thread about stopping treatment, especailly in males at 18 or so. I was told I would have to take the medicine for the rest of my life. My 17 hydroxyprogesterone test results have borne that out.

I have no particluar words of wisdom but as one of those who has lived with the problem for many years I thought I would share a few of my experiences.

If there is anyone older than me who has been diagnosed I would really like to hear from them. My sister and I speculate whether the doctors really have any idea what will happen to us as we continue to get older.

Michael K