Hi guys. I am a chinese living in Hong Kong. Nice to meet you.
I was confirmed KD a few years ago by genetic test. I am 33 now, can still walk, though not very stable.
I read a lot of materials about KD in this few years. I know that except motor neuron death, it also causes mild androgen insensitivity. I had sperm test and my doctor told me the result is abnormally low mobility of sperms. However I don't have abnormal breast growth, which is mentioned as the most common symptom of androgen insensitivity. For me, except the low mobility of sperm, I have reduced secondary sexual characteristics. I think so because the first onset of the symptom of hand tremer started when I was 15, and since then, it looks like my body has not further developed at all. I am 33 now, but still look like a kid, due to small skeletons. I am about 170 (the same height when i was 15), which is ok for chinese, but my wrist circumfernce (a common measure of skeleton size) is only 14 cm. My hands and feet are even smaller than most girls of my own race. I was frequently mistaken as a girl if I wear slightly longer hair, sometimes as high school kids when I first meet with strangers. Also, I need not shave at all. My brother (who also has KE) has similar problems, while my cousins, who don't have KD, are all quite masculine.
Anyone knows if there are some studies about secondary sexual characteristics and KD? Are they related? Thanks!
Frank, I contacted Dr. Taylor and his response is below:
"They may be related. Reduced secondary sex characteristics are a feature of androgen insensitivity and the degree of “feminization” is related to the degree of loss of function in the androgen receptor. In some KD individuals this may be manifest simply as a thin beard and lack of male pattern baldness, in others more androgen insensitivity is seen. You my send him my email address and I can correspond with him directly."
If you want to contact Dr. Taylor directly reference his response, please write me an email and I will send it to you. firstname.lastname@example.org
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614