Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 After reading 's post, I felt like I should interject a comment or two. The comments I am making here are from my own personal experience. I am 55, diagnosed at 8 and triple arthodesis surgery on both ankles at 12. I broke my left leg at 39 and then was fitted for plastic AFOs and after two years, I was using forearm crutches. Let me say that I believe all of this was due to my gaining weight. I have been in a scooter since 42, going places and doing things I couldn't have done before walking, etc. My weight is my problem now, and a battle I've not started to fight yet. I've gained 150 lbs. when I filed for disability, got in scooter and depression set in. (isollation). I have a wonderful husband and no children. I was 33 and he was 40 when we married. Point being - earlier in my young life I went to genetics counselling. It was all so confusing. I am a new mutation in my family, so no history except they said my parents genes were so similar that they thought they could have been brother and sister. Well, they were not. I have one brother, 11 yrs. older and at 66 he is not affected and plays tennis and golf, weekly (not weakly...ha!) Anyway, I get winded sometimes, back to the point I was wanting to make to you after reading 's comments. When I went to genetic counselling, they told me if I elected to have children - it would be 50 - 50 that they would be born with CMT or develop CMT. Here that. CMT. CMT. CMT..no other form..CMT. The question made to me by the counsellors " Are you so affected that you would not have wanted to have been born? " No. But getting married later in life and a husband who preferred not to have children, made it easier. I've had a great life and I'm still having adventures. It takes planning, and thoughts ahead of time. The one most important thing I could pass on to you at 20 yrs. of age is to get disability insurance on your own or save that premium amount in a savings account somewhere with compounding interest. If you are planning to work, they'll cover you, but get it yourself. I worked for 24 yrs. as a secretary and if I'd purchased a policy or saved money, my income would be double what it is today. In the workplace today it seems 45 is old. Plan for that fact of life. Hope I've help you some. Donna B. Quote Link to comment Share on other sites More sharing options...
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