I'm a 45yr old English woman living in Sweden. I found out last spring that I had CMT. It was a chock and reading up on the illness made it even more difficult to deal with. I live here with my 13 yr old son. I have no other family here and the friends I have 'don't do sicknesses,' .........their words.
Just before Christmas I found out I have type 2N apparently only a handful of people have........ making me feel even more isolated than before.
I was told that CMT is a very slow progressive disease and that I should continue my life as normal. I already had severe pain in my feet and legs, fall a lot, ( I have calipers now which help), and my hearing was going. My recent checks 3 weeks ago show my illness has more than doubled in the last 8 months. I now have braces on my hands, my speech is sometimes slurry and the nerves on the left side of my throat are not working properly. All they can say here is 'oh.' I was forced to go down 25% in work hours as I'm not able to cope. To claim 25% sick I have been questioned and questioned over to the validity of my illness. To say things are tough is an understatement.
I would like to know if there is anyone else out there with type 2N. Also, how do people cope with this CMT, an illness that seems not to be so widely recognized?