I'd like to share my views with you on
testing and telling
by Cindy Kwok, B.C. Canada

CMT is a physical impairment and to be honest, new acquaintances will see we are different. Of course, it would be bizarre if one is to churn out all the medical facts to a new friend within the first two minutes of saying the first hello. If someone on the street or a friend of a friend asks me why I am limping, usually I just say, "Oh, I was born that way." If it's a social acquaintance or a co-worker, the answer is, "I have a genetic disorder that causes muscular atrophy." They usually understand. I don't use too many medical terms since people will get confused (or at least they look confused) but there is no point in lying either. For good friends, doctors and people genuinely interested, I tell them in greater detail.

I think it is very important to be frank with someone who may become our better half because CMT is hereditary and I don't think it is right to conceal/forget this fact if one plans to build a family together. Love, support and frankness forms the tripod on which a family stands.
As for testing, I am not too sure at what age a child can first be tested to have correct results.

(Ed. Note - any age) My personal experience was a "no testing" one and, on hindsight, I feel it would have been easier if I had known the true cause of my clumsiness instead of having some difficult times in physical education classes.
The choice of testing before signs or symptoms is a very personal one but I guess children of CMT parent(s) should be made aware that they do have a chance of getting it so that somehow they are psychologically prepared. Parents should also educate them as much as possible about CMT and not treat it as a topic that is taboo in the family

Chooses not to tell
JLG in England writes: "I have a daughter, 22, about to be married and a son who is 25, a bright boy who hasn't found his place in life, yet. Our doctor says tell them they could be carriers but my husband and I have chosen not to as we feel it could ruin their lives. They may then choose not to get married and have children. If I had known and chosen that direction, I would have missed out on the pleasures I get from my two children.

"My son shows no outward signs of CMT. My daughter has a very slight foot deformity. If there was any remedy, I would certainly tell them or if it would be more prominent in one sex and they could choose the sex, I would tell them. But if nothing can be done, what is the point. Any of us can carry anything. If one has artificial insemination, one does not know what it carries...we are not God.

"I never told my daughter about CMT but I asked if she wanted to see a geneticist in case she had daddy's legs but she said, ‘What for, I want children,' so I left it."