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, Hello and welcome!

I am not of much help in the way of info., I am newly diagnosed. My two children

and myself have type 1A. It runs in my family, they didn't watch mine because

all my other family members with CMT had very high arches and I had flat feet.

No one ever really did much research or did anything to help themselves. So I

have been researching it myself and educating my family on CMT and what to look

for in their children. I am sorry to hear your birth mother could not bare the

burden, I hope you had a wonderful adoptive family who could.

Best of Wishes,

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  • 3 months later...
  • 3 weeks later...
Guest guest

Thank you for the welcome. I look forward to reading the messages and

researching the files in an effort to better handle my obstacle! I look forward

to seeing your Ascorbic Acid info.

Peace,

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Guest guest

thanks for the welcome:) 

________________________________

From: " MommyToJase@... " <MommyToJase@...>

Sent: Sunday, July 19, 2009 11:04:44 PM

Subject: Re: Welcome

 

Nice to have you on the list:)

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Guest guest

Thanks.  I am just now getting into the info shown. 

________________________________

From: Lois Gallo <loisgallo@...>

Sent: Thursday, July 16, 2009 7:01:22 PM

Subject: Re: welcome

 

Hi ,  Welcome.  

I'm new, too, and find the group very helpful.  

Lois

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  • 5 months later...

,

I'm a retired aerospace project engineer which had me dividing my time

between sitting and walking. It is very necessary to give our muscles a

chance to recover from hard usage. I'm sorry to say it sounds like you

are charging all of the time on your feet. The slapping of the feet is an

indicator alright.

But, how about Varus Heel, Pes Cavus Foot, atrophied muscles between thumb and

forefinger (gripping weakness), hammer toes, and progressive loss of sharp

feeling from the extremities inward? If it is affordable for you, a DNA

profile is probably the most definitive

test available. I was lucky that my desired profession matched up with my job

requirements. Had I wanted to be a pilot, it would have been a

problem as it was in my sport flying which I had to give up. It feel

AFOs create some balance and mobility problems.

Right now I get along with only one light, fixed AFO on the left. I have two

bigger hinged ones that work but limit my mobility a great deal so I won't use

them until I have to.

EdM from NH (West Ossipee)

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Hi Everyone,

I haven't posted here in a while, but I just wanted to welcome our new

members. Here's a warm hello to all or our new family! Welcome, and

it's wonderful that you're here :-) And to our 'old' members......

:::::::::::waving hello to you too!

Blessings!

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Wanted to add another welcome to a bunch of new members who just joined

yesterday/today. So glad that you've come this way.....and once again, it's

great to see this family grow :)

Many blessings,

>

> Hi Everyone,

>

> I haven't posted here in a while, but I just wanted to welcome our new

> members. Here's a warm hello to all of our new family! Welcome, and

> it's wonderful that you're here :-) And to our 'old' members......

>

> :::::::::::waving hello to you too!

>

> Blessings!

>

>

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  • 3 months later...

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