Last post Fri, May 30 2008 6:13 AM by giraffeboy. 13 replies.
I was born with CMT. I would like to talk with you about your treatments if any.
hello vicki, i don't have cmt [?] i am paralyzed but i wanted to welcome you to disaboom.
Hi Vickie, welcome to disaboom. I know of one other member with CMT on disaboom but he's out of town until March 6th. Here's his profile if you want to shoot him a PM for when he gets back: http://www.disaboom.com/members/jburd641.aspx
"Important events are obscure. Some believe all manner of hearsay evidence; others twist truth into fiction; and time magnifies both perversions."Tacitus
Hi Vickie,
I have a type of muscular dystrophy but not CMT. I have MELAS which is one of the 40-some other muscular disorders that the MDA funds research for.
Welcome to Disaboom and I hope you find everything that you are looking for.
Dave
Hi, Vickie. I am new to Disaboom, and also have CMT
hi stephen, it's nice to meet you. a firefighter ey? cool. welcome.
hi Iam Aleksandra Andonovska from Macedonoja skopje. I am 34 years old How old are you? Are you mried. I.am not. Write me somethin about you?
Welcome Saska, glad to have you here!
Hi Saska and Stephen nice to have you here as well.
Welcome.
Hi,
Vickieh67. I was also born with CMT and I was diagnosed at 16 when I could not walk the halls of high school. My mother had four children, four boys and one girl. All of us boys have contracted CMT as a result of her being a carrier, and my sister does not have it. We are all in our forties, and I am told that I am trhe worse off of all the brothers. I wear orthotics (braces) on eacgh calf and walk with a cane in public. I mostly use it outside and in public buildngs to kep fingerprints off of the walls. There are enough handholds in my house not to use the cane. I have gotten no harrassment from anyone for using it.
When my wife and I first went to MDA clinic, they warned us not to have kids, because I know what it is like to grow up with CMT and I would not want to put children through that. We didn't listen to that advise and now have two beautiful children, 11 and 12, and would like nothing more. They ae both very haelthy physically, and have no symptoms or side effects. No surgery is forseen, and I don't think it would help.
If you would like to know more, feel free to contact me, after we are here for support.
Mark.
Salutations to all the new members, Saska, Vicki, Stephen, Giraffeboy
Welcome to Disaboom
Stay Strong
Vinny
Hey I am 33 with CMT. I have been diagnosed at age 5. I was told I would be in a wheelchair by the age of 20 and here I am 13 years later and still walking, not great but still walking :) I just started aquatic therapy and I highly recommend it. I have already seen huge improvement in a short time. Feel free to contact me any time. I can certainly use a friend.
Andy
Hi Andy,
I also have CMT. I was diagnosed at 16. Life has beena struggle for me. I was told that I would be in a wheelchair by age 30. I am now 41 and, like you, amd still walking, with a cane as my constant public companion. I do wear AFOs, custom fitted braces from my calf that wrap around my feet. Help quite a bit.
I have been married for 14 years. My mother in law tried to talk my wife out of marrying me. She didnt want her to be my nurse for life. Hasnt happened yet and we have 2 beautiful daughters, neither affected. The dr told us, shortly after we were married, to not even bother having kids bercause I know what it is like growing up with this disability.
Contact me if you want to know more.
Mark
