Introducing myself

[Guest guest]

Hello All!

My name is Kate Lair and I am 22 years old. I live in Rochester, MN, am the

youngest of fours girls who all have CMT. We were all diagnosed as children

( we were actually a part of Dr. Dyck's study that found the gene, or genetic

link, or something). I had an EMG done when I was four and basically, have

not had much contact with physicians since then (until I was 17... but more

on that in a moment). I don't exactly know what level to describe my CMT.

In my family, I have one of the worst cases, my oldest sister and I have been

most affected, the two in the middle have barely any signs, however, I would

guess that in comparison to others with CMT I probably have a relatively mild

case. I do not wear any kind of afos or require any assistance walking. My

balance is poor, I have problems with fatigue (but whether that is due to

CMT, hypothyroidism, or simply trying to do too much, I don't know), I can't

run and there are periods where I fall down a lot. But for the most part I

am ok. I usually describe my disease to people as somethings that is

annoying more than anything else.

Anyway, my father is a pedorthist so he knows the proper excercises to do for

CMT (stretching heel cords, etc) and has made me afos (which I don't wear).

I have always known that I have the disease but never knew much about it

until I spoke with a Neurologist at the Cleveland CLinic when I was 20 and

got a little patient education. It took me a while to finally decide to seek

out my own information after having been told by my father that I was going

to end up in a wheel chair unless I did what he said (according to two

separate neurologists, this information is most likely incorrect).

CMT is a part of my life and has been for as long as I can remember, but like

I said, it isn't a debilitating disease for me (at least not yet). I just

recently found the CMTA website and have been doing a lot more reading about

it. I think I have done a good job of accepting my limitations but not

allowing them to limit me, if that makes any sense. I know very well what my

body can do and what it can't, and while I at times am frustrated, for the

most part, I am just me!!

Although I have what is probably a mild case of CMT, I do know what it is

like to be disabled. When I was 17 I had my wisdom teeth pulled and the

anesthetic sent me into cardiac and respiratory arrest (I never really got a

straight answer as to whether my reaction to the anestheic has anything to do

with CMT or not). As a result I was on a respirator for 2 and a half weeks

in a medically induced coma and paralyzed. THere were many complications but

eventually I pulled through. THe only problem was that I was lying flat on

my back for three whole weeks and lost all muscle strength. WHen I woke up

in ICU I could barely sit up let alone stand or walk. I worked my way from

the bed to the wheel chair to the walker to the cane to finally nothing, but

it took three months of physical therapy to undue three weeks of damage!!

I graduated from college this past december with a degree in sociology and

american culture studies and am currently working for a company that runs a

series of group homes for the mentally retarded, eventually I plan to go to

graduate school for sociology.

After graduating from school I moved back to Rochester (where I am orginally

from) and saw a neurologist this past spring just to sort of check in

(because it had been a while). Because the Mayo clinic is Oh-so-organized,

the blood tests that I had done when I was four were lost and the neurologist

I saw was thinking that the original diagnosis may have been incorrect (based

on the EMG from when I was 4, because there was already so much nerve damage

at such a young age). She ordered another EMG and another blood test. I had

the EMG done but have not had time to go in for the blood test and am pretty

sure that the second EMG was unnecessary and a waste of my time. Doctors can

be such a pain sometimes!

Well, that's just a simple introduction to me, I am looking forward to

hearing from people. I am especially curious to hear from women with CMT who

have had or plan to have children. Although I am not planning a family right

now, I would like to have one someday and would like to know what to expect

in terms of carrying a child. Also, would like to know how often people go to

their neurologists. The one I saw in the spring suggested I come in about

once a year just for checking in, but I am wondering if that is really

necessary. Don't want to make any unneccesary trips to the doctor, I have

seen enough of the inside of hospitals for one lifetime!!

Thanks for your time and I look forward to hearing from you!

Kate