Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Esther, I am 32 years old and I am a special education teacher. Because of my CMT, I have grown to have compassion on people with various disabilities whether it be physical, learning, or emotional. My CMT has been my blessing. My husband not only loves me in spite of it, but because of it. He has some health problems as well, and was understanding. We understand each other. I have one son that is CMT free. We are talking about adopting a baby from China. I agree teaching is very tiring, but when I am told by a student that is struggling that I inspire them to move beyond whatever obstacle they face, it is a blessing. If you want to talk, email me anytime. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Welcome Ester. One of the main reasons I started this group with an emphasis on the positive is that I too, found such negativity in the CMT community. I hope your experience with will be positive. I grew up on the West Coast and was diagnosed in the 60's - long before much was really known about CMT. So I had the best medical care around and just went about " having a great life " , living, loving, being, doing, working, traveling, you name it. And I'm still at it at age 52. I do not wear braces; all I need is an orthotic that slips in my shoes. I exercise regularly too. Life is real, life is simple, life is good. I have so many interests and projects. I was raised with the " you can do whatever you set your mind to " concept also. And yes! Ester, YOU are as special and as normal as anyone else. I refuse to be a victim or a sufferer of CMT. I have had friends for 30 years that when I told them about being in a magazine, they said " I had no idea you had anything like that " . Well of course not! I have never hung my head in shame or felt " less than " just because of CMT. If anything because of CMT, I felt a need to achieve more, to do better, to be better...so for me having CMT is a blessing in a way. Getting married has nothing to do with CMT...you will meet Mr. Right at the right time and it'll happen. Keep on with your career in teaching, and keep on developing yourself. For the men you date, maybe work up a 5 sentence synopsis of what CMT is. Keep it simple. If you are comfortable with it, they will be too. Keep educating yourself about CMT, it is so variable with all the different types, and keep up to date on research. You can direct your men friends to us at http://hope.info - they can read the front page; we also have a Fact Sheet with info that is currently being updated for 2005 you can print off. Time is on your side, be patient, and remember to have FUN! Gretchen (PS - for years I always referred to my CMT as a " condition " also) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Esther, I was 22 when i started getting diagnosed. I met my husband-to-be after Iwas diagnosed, so he knew exactly what he was getting into. Before we got engaged, he thought long and hard of how life could be different being married to someone with CMT. He decided that he could handle it and we would just make adjustments along the way. Unfortunately, the marriage did not work for other reasons and 2.5 years later, I was single again. I have been single ever since and have dated sporadically. I find that the decent men out there are intrigued and in awe of people like us who are faced with challenges and continue to smile, dance and whatever else we all like to do. No to say that Ihaven't met jerks along the way, but then again, so have my " abled-bodied " single friends, so don't always think that it is the CMT, but maybe just their immaturity and looking for " perfection " which they will never find in anyone!!! Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hi Esther and welcome! I'm 25 years old and have CMT Type 2X. My father and his 4 brothers have it, as do my 2 female cousins. I married a wonderful man, Steve, when I was 21. Before we were married, we both discussed children and the chances of my passing CMT onto them. He has been fully supportive and thankfully, my having CMT never scared him off. Like you, I don't show many signs. Mostly I walk w/ a gait, have trouble w/ circulation in my feet, fatigue, and mild problems w/ my hands. After 7 total years together, Steve and I are trying to conceive our 1st child. We had a preconception consultation w/ my GYN in August. I wanted Steve to hear from the doctor about the chances of us having a child w/ CMT. With the type that I have, a female is a carrier and usually passes it on to males. If I have a girl, she will be a carrier like me and show mild to no symptoms. If I have a boy, he could show no signs or he could be severly affected. Even though he knows these risks, Steve has been so caring and wants children w/ me regardless. I wish that everyone w/ our condition, could be blessed w/ a spouse like mine! I definitely understand where you are coming from though, and I think that joining this group will help you tremendously. Everyone here is supportive, compassionate, and full of great advice. If you'd ever like to talk to me privately, please feel free! I enjoy talking w/ people around my age who have CMT. God bless and take care! A. Quote Link to comment Share on other sites More sharing options...
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