My daughter is 15 and has CMT type 1A. She was diagnosed (genetic testing) when she was 5.
I am seeking some support/help from those who have teenagers suffering this disease. DD has many varying symptoms and is progressively getting worse. Having CMT has played a big part in her moods and her self esteem.
A few of my questions are as follows:
DD has incredibly sweaty hands and feet - is this normal? Dr has told us this is part of CMT - we need remedies.... has anyone successfully treated this? having sweaty feet is incredibly hard as she has enough trouble with clumsiness without slipping in her shoes.
DD describes hip pain all the time.. I am taking her to the Dr to get this looked into further - but she often cannot walk less then 1km without pain (i wonder if this is compensating for the way she favours her walking etc due to her bad legs?)
Lastly, not having CMT myself I can only go by what she is describing to me - I am worried at the rate of deterioration - how can I best support her through this?
Thanks in advance :)