Sarah

Think of the number 360,000 – pretty big number huh?! In that number of births only 1 is born with the arm condition I have. I was born missing my left arm above the elbow, and at the end of my arm is what I call my nubbins. Well they would have been my hand and fingers if it had grown properly. Not only that but I was also born with a skin tag on my lower lumbar spine which they thought nothing of because an x-ray was taken right after birth in 1979 and the Doctor thought it was nothing to worry about. I was always so self-conscious about the large skin tag that at age 20 I wanted it removed. So I went to a Doctor and he wanted to just cut it off in the office and I requested a MRI to be sure. I had the MRI and saw a neurologist and he told me I had I had a type of spina bifida oculta. I had surgery in 2000 to correct my spinal cord and spinal column. I never had problems and thank God never will with my legs as 90% with this condition have. So I guess you can call me lucky.

About six weeks after I was born I was sent to the University of Madison Genetic center to have some tests done. They were looking for a possible gene that was in my family that might have caused my short arm and my spina bifida. My maternal grandma’s cousin was born with no legs and my mother’s cousin was born with severe spina bifida. In 1979 testing was not the greatest yet, so they didn’t find much. I guess that is a mystery and I will always wonder. While attending Madison they fit me with my first prosthesis. I have had every kind possible and I’m full of advice on each one. Some examples the plain hook with moving elbow, myoelectric, passive light weight (both put on by use of a sock) and the latest pin and socket passive. (And many more)

I have always been the person people come to with problems and like to talk to because they say I am so easy to talk to. Please any questions or comments you have please let us know that is what we are here for!!

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