by Stella Do Nascimento (Oct. 1993)
I was very pleased to receive information of the existence of such an organization as yours. My brother, John, aged 15 has CMT and is becoming increasingly conscious of his body and physical appearance. That is one of the reasons why the pictures of other kids with CMT in the newsletters you sent made such an impression on him. He was diagnosed at the age of three.

John has been affected in the following way. He has little use of his fingers. He is able to write, although one battles to understand his handwriting. Then again, that is probably true for 50 per cent of the human race. He is unable to flex his wrists and ankles or wriggle his toes. Almost since diagnosis, he has had to use splinters (splints) on his legs which act as supports for his ankles. The splinters go from below his knees, on the back only, to just before his toes under his feet.

He battles with the usual things such as zippers, buttons, cutting, and generally actions requiring delicate finger movements.

Lately, I have noticed that he is battling to chew his food, and I should mention that he has difficulty in chewing and swallowing. This only began happening about two years ago and the doctors here have just attributed it to being part of CMT. Often, whilst chewing, he uses his shoulder to help his lower jaw close onto the top jaw. Also, he is unable to swallow very well, and as a result sometimes, unawares, he may dribble, especially at night when he sleeps.Where will it all end?

Even though he is 15 and his voice is probably starting to break, I feel that CMT is at it again. His voice is what is mostly concerning him now. There are times when he has to repeat himself to be understood and once or twice he mentioned that for a brief moment his voice actually failed. John gets frustrated when his teachers can't understand what he wants to say and he feels embarrassed having to repeat himself.

He is a very intelligent man (I'm not allowed to say he's a boy anymore, even though he will always be my kid brother, I'm 23) and has many ideas he would like to express or questions he would normally ask but feels restricted. Understandably so, he feels embarrassed with his ‘squeaky' and ‘scratchy' sounding voice. He has been diagnosed as having one vocal cord paralyzed.

My concern is that I have always been under the impression that CMT only attacked the outer limbs. Is it possible that he has been misdiagnosed or has some new discovery been made regarding this issue?

If indeed CMT does attack other parts of the body, does it mean that it could attack his heart or brain or lungs? Please could you send me information on CMT in general, any recent research material, and perhaps put me in contact with other CMT people that I could correspond with. It would help my family and me greatly to have at least a greater knowledge of what we have to encounter from day to day.

Linda here: There are others out there who experience CMT as John does. Yes, CMT can affect much more than the knees and elbows down. Difficulty chewing and swallowing is being researched as well as vocal cord paralysis.