Peggie Weston in Arizona writes: "Most of my life I have worn short leg braces that are not visible to the public. I have worked many jobs, gone to college, etc. I normally surprise people greatly when they see me try to go up or down steps, as they had no idea I had a problem. I have never told any new acquaintances about my CMT unless they asked, or in a group conversation. I have never tired to hide it but it just worked out that way for many years. Now I must use a cane, along with my braces, so it's much more visible. But I have made a practice of doing all I can for myself and never use my disability to get help. Therefore, I still never mention it to any new acquaintances unless they ask.
"I have found that after people get to know you for yourself and accept you as a person with a brain, sense of humor, etc., then my disability seems to be secondary. This is the way it should be but many times is not. So, if I ignore my disability, they seem to also. I seem to make friends very easily from all walks of life, get along with the public well and am very willing to share information about my disability when asked but I might add, it sure would make it easier for me if I had broken my leg or been in an accident…they would be much easier to explain!"

Tracy Mankins of Ohio writes: "I want to say that as an adult, who was once a little kid with a scary disease, I can tell you from first-hand knowledge that it is better to know what is coming than not to know. Kids have amazing imaginations, and if they hear their mommies and daddies crying off in another room or whispering about something that is wrong with them, they will imagine all sorts of awful things. The things they will imagine might even (probably will be, actually) worse than the truth of the matter.
"Aren't your kids at the doctor's office with you when their diseases are being discussed? You would be amazed at what a young child can pick up on.
"Kids also know when they are different and it will scare them if they don't know why or what to expect next.
"Please, please, please be honest and open with your children. Don't paint a picture of doom and gloom for them, but tell them the truth about their diseases. Also, make it a point to tell them that the doctors don't know everything. There are many of us adults out here who have outlived many prognoses in our lifetimes. And, stress strongly that they can and will live happy, productive lives, no matter what their disease is or what the docs say.
"And please…don't let your kids watch any telethons. Those 'teary' profiles that are filled with little kids suffering and dying are horrifying to a child. I know, because they used to horrify me. I have lived my whole life fearing that I would die tomorrow…feeling like I had no future. I am just now (at the age of 29) sometimes able to see some light in this area. What caused this? Watching the telethon as a child.
"Sorry to come on so strong, but what I really care about here are the little ones. The adults with neuromuscular diseases know what it is to be in their positions. Please listen when we speak."

From Stella Sauers, PA, U.S.A.
To Tell…a difficult question and one I'd have no answer to, but from my experience with life, I know anyone can handle anything thrown at them if they choose to.
We did not know about CMT until our Tina was diagnosed about 16 years ago. Our other daughter was told she has MS about two years ago – her symptoms were nothing like Tina's.
As they were growing up, we thought with no problems, I always told them…we're all born with a handicap of some kind or other and that I (mom) was going to be their biggest. They still believe that one!