My HSAN1 Story

My name is Ifeng Hsiao, I’m a Taiwanese, born and raised in Taiwan. As a toddler, I was as healthy as other kids. One day when I was 5, my mother discovered something wrong with me while she was bathing me. I stepped into a bucket filled with bathing water, as soon as I sat down, I screamed and jumped out of the water “it is too hot, mom!” “but your feet were in the water first before you sit down, how come you didn’t feel it then?” I did not know how to explain it.

My mother soon took me to see pediatricians, but no one knew what’s wrong with me. “your daughter is fine!” said most of doctors. “She is just a little skinny, feed her more milk!” Another said.

I started to have club feet and my calves looked thin when I was in 4th grade. My mother took me to hospital after hospital looking for answers. After I went through the prescribed lab tests, NCV, EMG, and nerve biopsy, a pediatric neurologist in National Taiwan University Hospital said that I have CMT. He recommended my parents take me to other countries where more medical resources are

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