I was paralyzed from HNPP for a long time on my hand and my other hand has got weaker. I went through many many tests but they didn't know what I had. I went to different doctors, they did different things to me but they never knew what I had. I was scared that I would never get my hand back til finally a doctor named Dr. Sakanju and another doctor named Brian. And after I found out about HNPP I couldn't do lots of things or I would get paralyzed again. I learned to live with it but I still worry if I will get paralyzed again. I hope to find someone that is like me and share what happened to them.
(I am an eight year old girl who has HNPP)
Monday, February 21, 2011
Welcome to Our Story
I wanted to start this blog to share our family's experience with HNPP. There is not a lot of information available so the more we can share the more we can help each other and help in the research process. We would love to hear from you too.
- Our Family.
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