Living with Dejerine-Sottas

This respon~ submitted by Roxie Meck on 10496

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I was originally diagnosed as having Charcot-Marie-Tooth disease at age 2.1 didn't start walking until about that age. I had braces to the knee from an early age due to my ankles turning. By age 5 1 had lost the use of my hands. By age 7 I was using a wheelchair 50% of the time and walking was much more difficult. I was swimming independently and was quite active. By age 12 1 was unable to walk. The doctors were not satisfied with my diagnoses but didn't know what to call it. I was treated at Dombecker Hospital in Portland, Oregon from 1964-1970, I am now 38 years old. Today I live in Arizona with my husband, who is disabled from a spinal cord injury. I am mostly independent in my activities of daily living, I use a power wheelchair and have since age 14.1 have accomplished everything I have set out to do. I am happy to share any information I can about Dejerine-Sottas disease and how it has affected my life. I was only recently positively diagnosed with this disease, at least with currently available information. You may contact me as rdmeck@azstarnet.com.

 

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