Re: Hearing BS from other people

[Guest guest]

Your " friend " was out of line in making that statement. I have CMT and passed

it to both my children. A girl and boy. I have a beautiful grandson from my

daughter who has an absolutely wonderful good looking husband. By the way I do

too.

Barb

[Guest guest]

I was told that if you have CMT your children have a 50% chance of inheriting

the disease from you...not sure if that is true or not (coming from VA dr's) ,

my only concern is that they will have the same kind as me and it is very

painful and hard to live with. Have

heard a blood test can determine if they have it but not sure what type of test

this is.

Jordan

[Guest guest]

OH MY GOSH!!

CMT will weed out most of the superficial creeps. I have a super wonderful

spouse as do many of us on this list.

When I was first told that my kids had CMT a lot of what people said haunted me.

After time I learned to sit in the drivers seat so to speak and not be lead

around by ignorant words. Someone remarked a few weeks ago about my bad

genetics. Years ago this would have thrown me into a deep depression. But not

now, this time I looked at her and told her that she didn't have such great

genetics either. She looked shocked that I stood up for myself and agreed. lol

[Guest guest]

Jordan,

There are several ways of CMT inheritance. The 50/50 is for the most

common autosomal dominant types. Yes, there is a DNA blood test, it

does not hurt, go to http://www.athenadiagnostics.com/ the lab is in

Boston. Your doctor can order the test. One type of CMT is in a family, but

members of that family may experience different symptoms and degrees of

severity.

Gretchen

[Guest guest]

Your 9 year old can do anything she sets her mind to and be anything

she wants. Of course she can marry, have kids, plus much more. Plus

your daughter will be loved very much. Don't listen to the

undereducated ones!

Gretchen

[Guest guest]

Wow what a thing for someone to say. I have both diabetes and CMT 1A. I have 3

children and believe I have passed it onto my oldest daughter. Do I feel

guilty, sure I do can't help that part of being parent. I feel no more guilty

about CMT then I do with other mistakes as a father I have made. I have to face

it that as parents we all make mistakes, especially with the oldest ones. Part

of the learning curve with have a parents.

Would I change anything if I had known about my CMT prior to having her. Not a

chance, my children are my greatest gift (my wife included of course) and I

would not change a thing. I figure the advantage she has that I did not was

knowing at a young age. I can guide her in the sports activities she does.

Make sure she has the best shoes for her feet. Stretch her muscles now. Etc...

Don't believe everything people say about diabetes or CMT. If it ones thing I

have learned about both diseases is that they both affect people different, very

different. Again I have both and have 3 wonderful children. I would not change

any part of my life, not even the CMT. It has built a certain character in

myself. I have a way about me that I believe others do not because I have CMT.

Sure there are bad days and guilty days especially when my daughter wakes up in

the middle of the night screaming of pain in her foot. I help her through it

the best I can, tell her I understand and in the morning sometimes she even

forgets she had the pain.

Hope this helps,

[Guest guest]

What a terribly cruel thing to say! And ABSOLUTELY UNTRUE! Diabetes, CMT, or

any health issue doesn't determine marital status or happiness or having

children. He is not right.

[Guest guest]

What a crazy statement that person made! That makes absolutely no

sense at all! She will never have kids and can't get married!? Now

that is just ignorant.

We all have our problems even if we don't have CMT. There are no

guarantees that any child will live a mostly healthy life. You never

know. I think you have just let go.

[Guest guest]

I don't want to sound mean but I seem to be the only one that feels this way

about this but after dealing with this for many years and having pain constantly

I won't have any more and will not subject my kids to this (even if they have

50% chance of getting it), the

odds are not good enough and I just won't put them through what I have went

through. With pain and depression and trying suicide, not a good quality of

life. Things are improving somewhat but I hope you all

can agree to some degree.

[Guest guest]

Oh please! Your " friend " had no reason to say that. What happened to

what my parents taught me? " If you have nothing nice to say, then don't say

anything. "

Your incredible daughter is going to grow up to be an amazing and

strong young woman who knows how to manage her CMT (if she has it)

because of you. She's going to meet an amazing man one day who only

sees how much he loves her and how wonderful she is. The same things

you see when you look at her. Keep that as the central thought in your mind.

She's going to be able to do anything she sets her mind to (within reason) and

she's going to learn strength, courage, and how amazing she is from you.

I went through those thoughts as a teenager... never going to meet

anyone who saw past my disability etc etc.. my husband is the sweetest and most

caring man I've ever met in my life. He's not half bad to look at either...

Please keep your chin up. It won't be easy, but it won't be as hard as you're

currently imagining it to be.

Hugs,

T.

[Guest guest]

Yeah, I have a great husband. My mom has a great husband - my dad.

CMT didn't affect my ability to date or marry. I am lucky to have my husband

and he is lucky to have me.

Chris

[Guest guest]

Jordan,

No, you are not the only one that feels this way. I would not wish on anyone the

pain, depression, and the suicide thoughts, as I have had many.

The guilt of passing this on to my son has been enormous, and now he is married

and has two girls, and I can already tell that my 2 year old grandaughter IS

going to be affected with CMT, and am already looking for the signs in my second

grandaughter who is only 5 months old. Would I trade my children for anything?

NO, but if I knew 25 years ago that he would suffer far worse than I am I

honestly don't know what I would have done.

I would like to invite you to join my IM, in case you ever want to chat.

Donna in Indy.

[Guest guest]

,

Great response to her, you handled it well. I think I would have

slugged her. LOL

Donna in Indy.

MommyToAdam@... wrote:

OH MY GOSH!!

CMT will weed out most of the superficial creeps. I have a super wonderful

spouse as do many of us on this list.

When I was first told that my kids had CMT a lot of what people said haunted me.

After time I learned to sit in the drivers seat so to speak and not be lead

around by ignorant words. Someone remarked a few weeks ago about my bad

genetics. Years ago this would have thrown me into a deep depression. But not

now, this time I looked at her and told her that she didn't have such great

genetics either. She looked shocked that I stood up for myself and agreed. lol

[Guest guest]

Thanks Donna, I left the part that it was my half sister that said it.

[Guest guest]

,

Good for you! I don't know the whole story but people can be so rude; it seems

especially to those who do nothing but work and struggle and try to keep their

families happy. I know. I've been treated that way constantly.

Dawn

[Guest guest]

, Well said!

Dawn