Welcome Christy

[Guest guest]

HI Christy,

It is nice to meet you. I have 5 children 3 have CMT. I understand your

frustration. I was told as a child that my Dad and Sister

showed signs of CMT but they were A symptomatic. So here I was 7 years old with

full blown CMT and my older Sister was skating and running all over the place

wearing high heels. I am sure today that my sister and Dad did/do not have CMT.

My sister has 7 children not one has CMT and she is still strong as an ox.

I get really tired of CMT and look forward to the release of least one

treatment of many that they are working on. The future will be better for the

next generation of CMT kids.

[Guest guest]

Welcome Christy and thanks for sharing your story so far and

introducing yourself. Like you, I fell alot as a child (most of it on

the playground) from age 7 to 9 I had symptoms then at age 10, my

mother noticed I had great fatigue when walking, which got me to an

orthopedist who diagnosed me with CMT. That was 1962.

And yes, I still have it, but now it doesn't " rule " my life as it once

did. I have custom made orthotics inside my shoes, and have not

experienced progression as others have. I have traced my family tree as

far back as the 1500's (in Basel) and haven't found any current

relatives in that " tree " (lol) that have it.

I have opted not to have genetic DNA testing, but perhaps you might

want to look into this.

Again, welcome to . May you find hope and helpful friends here.

~ Gretchen (Founder and Moderator, )

[Guest guest]

Christy,

Aounds like you have been through some hard times. Your MD should check you more

than once a year, once a month is more like it. Try some Vitamin C for your

strength. There have been mention of it several

times on here and it has helped me. You will find a lot of helpful information

on here. Good Luck.

Debbie

[Guest guest]

Hello Christy,

My name is . I live in Wirtz, Virginia. It's about 20 minutes south of

Roanoke. Im about 30 minutes from the North Carolina line. We might be close!

My sister lives in Charlotte. I get to visit

her every couple of months. Maybe we could get together.

You will not regret joining this group. Your definitely not alone.

[Guest guest]

Hello Dear Christy,

Very Warm Welcome Here, and Thank you for sharing your history with

us today. Christy , don't feel alone because ...You are not alone. I can

understand it so well, we all know how hard sometimes life

can be. Sorry to hear about your dear mom...I really wish ALL the best to her

too.

Christy, WE ARE UNIQUE...even with CMT no one is the same...always

remember that please. Don't presume anything,worrying takes us no where... think

about what you can do in the NOW!

We must keep our HOPE HIGH and surely when we look behind us things could be

much worse...believe me!

Imagine if God would let us throwing in the air all the problems

existent in this world regarding people's health...I am sure you

would like to pick up yours instead of the somebody else health

problems...think about it for a moment.

I too, been through much the same as you. My mom also had CMT and I

did not know I had when I was young. I could do so much...dancing,

playing, jumping, all sorts of things like normal people do. I also used to see

her falling down so many times, telling about the

weakness in her legs and not being able to wear certain shoes,

etc...it was so difficult for her as well.

Well, Mom used to have this high force inside her..she complained

sometimes , but not a lot. She always used to say to me " please , look around

Joana, there are people who can't walk at all, or even moved their bodies " ...and

yet they are happy people inside, grateful always. She had a lot of gratitude

inside and that I will always remembered from her.

Christy, you are so much younger than me and please carry on

exercises and try your best in this area if you can. In the past my doctors used

to say...please , exercise always and never give up...swimming 20 minutes

everyday and I never done what I

was told at that time..How stupid of me. If I only knew the out come ? No , I

did not...though I would be dancing for ever and

ever...hahaha!

Well, probably if I would had had listen to my doctors and

consultants in the past 20 years I would be dancing and jumping up

to now...like many others out there. I am going to gym every day almost now. Try

really my best ...now I am 51 and I am a bit out of shape and maybe, just maybe

today is not the best day to email you.

I am going through hard time but even then, I will survive here, I

will carry on no matter what takes me to do now. I will see an orthopaedist next

week because I have been unwell with my hips and legs...a part of that many

others things been happening in my life emotionally.

Well, this is life..Life is happening to all of us, and it is the

frame of mind, the way we think and react towards everything that

really counts.

So, You are Strong, grateful and have HOPE Christy. You are Young Heart and so

many new experiments being going on in medicine nowadays, particularly on stem

cells ..who knows what is on the corner for us with CMT? Are you taking

supplements? taking Vit C and E?

Shall we have positive attitude and really trust in the future...

I am saying that for myself everyday, at all times from now on....

You are not alone here!!!!!!!!!Feel free to email me anytime ok?

Gretchen knows my email..feel always free ok? I wish all the best to you and

your family... Send You a BIG hug !!!!!!!!!

Joana in London

[Guest guest]

Hi Christy,

My grandmother had CMT and my son was diagnosed about a year ago. However my

father has no symptons and neither do I. They tell it does not skip generations

so my father and I must be carriers somehow but do not seem to have CMT. No one

else in the family knowingly has CMT either.

Lori