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Hear My Voice: Living with Prader-Willi Syndrome

by John Hudson-Symons

We have feelings, dreams and personal thoughts. We have a heart, a soul, mind and spirit and we need you to understand us. Understanding and caring are two of the most important things you can do for us. In high school the students did not understand me either. I loved to learn. I went through so much pain and harassment at school because I wanted to learn so much. The hunger urges at school were difficult to control. It was hard to watch other students eat snacks. I tried to ignore the snacks the best I could but then I became agitated and started constantly trying to sneak food and at school and at home. I didn’t mean to be a sneak, but I could not help myself. The food desire was in control!

My father was a doctor and my mother was a nurse. If I was left alone I would eat everything I could. I would think about food all the time, food is everywhere – on TV, at school, at home and in the junk mail. I would even hide food and sneak food that belonged to my brothers and sisters. I had no control. I could feel sharp teeth tearing at my stomach like piranhas -- and still do. I know that I need someone to keep the cupboards locked and I need someone to keep me active to control my weight. I want to have some fun in my life. I have the right to have the same CHOICES in life that you do.

If the government has money to fund crisis situations why can they not prevent situations from becoming a crisis? I need full support NOW before I get into a crisis situation. I want to live and I am sure that you want the same for your child.

The above was written shortly before John, who had Prader-Willi syndrome,
died of obesity related causes.

Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
(941) 312-0400 • (800) 926-4797
www.pwsausa.org