only one in family with CMT

[Guest guest]

Jan in Illinois,

I am the only one in my family with CMT. Spontaneous mutations

happen. And they are not so rare as once believed.

Gretchen

[Guest guest]

Gretchen,

Oh, add me to the rare list!

[Guest guest]

Jackie,

Let me answer this because I was one of the ones that got that conflicting

result.

You have a 50 / 50 chance of having a child with CMT. I thought that the

doctor told me that since I was the only one in my family that I didn't carry

the gene. Maybe he told me I was from another planet. I think I just heard what

I wanted to hear. Five kids later, 3 have CMT Aw life has its moments.

Type X is different.

[Guest guest]

Hi, our son was just diagnosed with CMT. He is 5. He is the only one in

our families to have it. I had never even heard of it until 3 weeks ago. He was

just fitted with AFOs and is doing really well. We had been searching for an

answer for 2 years and no one knew what it was. We has seen several Dr.s

including a neurologist, and have been in ongoing PT for 8 months. Everyone

thought he was clumsy. But I knew it was something else.

Jeff

[Guest guest]

Jackie,

Even as far back as the 1960's, my doctors at UCLA were quite sure I

would pass the mutation of CMT. And even then they were kicking

around the theory that second generation mutations of it were more

severe. No one ever told me not to have children. That is a

conclusion I came to after much thought, reflection, and prayer.

Gretchen

[Guest guest]

Hi Gretchen:

Add our son Gavin too, we just found out that he is a spontaneous mutation

of type 1A...Kids of this age are great, the other kids at his kindergarten

happily help him put on his AFOs!

Cheers

Sally

[Guest guest]

My son 14 years old is the only one has CMT in our family too.

Betty in Toronto

[Guest guest]

Hi -

I am the only one (known) in my family with CMT. I tested positive

for type 1A several years ago.... although my neurologist was a bit

surprised by this.

I have 2 brothers. Neither them nor their children have CMT. We do

not have any children. At one point, when we were considering

children, I did ask my parents to get an EMG test. My father showed

an abnormality but not one that could be associated with CMT. My

mother showed normal.

The only signs of CMT in the family are a few people with high arches.

When I was small I was taken to Boston Childrens for all sorts of

evaluations. They never (at that time - early 60's) referred to the

disorder as CMT... they just called it peripheral neuropathy.

Finally a diagnosis of CMT was given but that was much later in life.

I once read somewhere that there was a reportedly high number of

individuals with CMT in Scandavain countries... which is my

heritage... So who knows...

Cheryl