If Charcot-Marie-Tooth is a progressive neuropathy, why isn't it terminal in most cases? Do most people reach a plateau where the disease stops progressing? Also, is there a gender, age of onset or rate of onset that gives clues as to how aggressive CMT will be?
CMT does not affect vital organs so it is not a life threatening or shortening disease. I am 46 and was born with physical problems. I was diagnosed at age 13 or so and have been wearing AFO's since. I've had doctors tell me I am as bad as I'll ever get but I notice changes every year. I have a very difficult time with anything that requires thumbs or straight fingers. I also was told that CMT was more aggressive in men and that women were carriers, I no longer think this is accurate information.
Staying strong, a good place to look for some of your answers is www.hnf-cure.org. There are many kinds of CMT and it affects everyone different. Hope this helps.
There are so many variances in each person even families that have the disease. No way to tell how it will respond in each person. Stay healthy as long as possible and keep exercising.
It is not terminal. People live the normal life span. As far as affecting organs, it can affect the diaphragm. It also depends on the type of CMT that you have as to how it progresses and what if effects. Good online resources are CMTA (Charcot Marie Tooth Association) and the HNF (Heriditary Neuropathy Foundation).
It is a matter CMT itself doesn't take your life. However, secondary issues can be heart disease or weakness, (biggest muscle in your body) breathing (diaphram,) Asthma (airways triggered by nerves can malfunction) Life expectancy is why they say not fatal. It won't kill you but you can develop diebetic issues etc. that can be fatal. Long of it is, pace yourself and try to work within limits rather than stress your body so it does develop more serious issue sin your body.