i am 48 now, born with CMT and life is fantastic and not just tolerable... just learn to recognize your gifts others around you dos not have other dosen't
You are blessed to have a partner to help you live your dreams. Living with CMTfor 48 years has taught me to be resilience, grateful and flexible. Lifecan be whatever you want to be but you have to be able to roll with the punches.
@@BethanyMeloche Hi Bethany. Happy for you, I was diagnosed with CMT Type 2A2A and can I ask you this?? How can someone plan children without this condition from passing on to them?
@@vinodkumarrayudu8092 Hello! For some types of CMT, it is possible to do IVF with pre-genetic diagnosis. This involves making embryos in a laboratory and testing them for CMT, then transferring a CMT-free embryo into the woman with the hope of starting a successful pregnancy.
Hi Erika... sending you hugs and love from London. ❤️ We deal with very real challenges, but I meant everything I said in the video. Life can still be filled with love, joy, adventure, fulfillment. Life can still be fantastic.
I was diagnosed at 32, still do my job as a nurse but with difficulties and had a huge meltdown this afternoon as I was alone, I have a 15 years old, and everything I wanted to do with her I cannot, I cannot walk for a long time before getting tired, nobody understand around me because I am the only one in my family and even in the medical field CMT is not well known, I still dream to do a lot, but it's difficult at time, I am now 56 and single, then I need to find the energy and the answer myself.
I was diagnosed at age 48. Looking back, there were signs about 5-7 years before. Never heard of CMT until they told me I had it. I have days when I want to just stay in bed and not even try anything, and I get tired more easily than I ever used to at too early of an age (much too young to feel this damn old...) I had to take a non voluntary disability retirement from law enforcement about three to eight years before I planned to. Iam, however, still alive. I have a wonderful wife and family and friends. My point is, after the long way around, look for what you can still do, and look for the positive. And if you knew me, that alone might crack you up... Anyway, I hope you're doing ok.
@@cmcd1008please don't mind me asking this. Have you passed this condition on to your children?? I got married recently and was diagnosed with CMT Type 2A2A. I am worried ☹️
We created this video for our study about how #charcotmarietooth impacts people's daily lives. Bethany's message is so inspiring, we've shared it everywhere, again and again! Mark her words! #CMT #rarediseases #research #inspiration For more of Bethany's work with us and the CMT&Me app, watch her tutorials here: ruclips.net/p/PL3Lg4i94ihso41yWaxRqSSHEvkG1eO0YN
Your my hero!!
Aw, you've made my day!!
i am 48 now, born with CMT and life is fantastic and not just tolerable... just learn to recognize your gifts others around you dos not have other dosen't
Cheers to this! So glad to that :-)
You are blessed to have a partner to help you live your dreams. Living with CMTfor 48 years has taught me to be resilience, grateful and flexible. Lifecan be whatever you want to be but you have to be able to roll with the punches.
100% Liza! And yes, I am very blessed to have my husband. :-)
@@BethanyMeloche Hopefully it will stay that way
@@BethanyMeloche Hi Bethany. Happy for you, I was diagnosed with CMT Type 2A2A and can I ask you this?? How can someone plan children without this condition from passing on to them?
@@vinodkumarrayudu8092 Hello! For some types of CMT, it is possible to do IVF with pre-genetic diagnosis. This involves making embryos in a laboratory and testing them for CMT, then transferring a CMT-free embryo into the woman with the hope of starting a successful pregnancy.
I have been very discouraged about this diagnosis that I was given last year. Thank you for these words.
Stay strong and be good to yourself
Hi Erika... sending you hugs and love from London. ❤️ We deal with very real challenges, but I meant everything I said in the video. Life can still be filled with love, joy, adventure, fulfillment. Life can still be fantastic.
I was diagnosed at 32, still do my job as a nurse but with difficulties and had a huge meltdown this afternoon as I was alone, I have a 15 years old, and everything I wanted to do with her I cannot, I cannot walk for a long time before getting tired, nobody understand around me because I am the only one in my family and even in the medical field CMT is not well known, I still dream to do a lot, but it's difficult at time, I am now 56 and single, then I need to find the energy and the answer myself.
I was diagnosed at age 48. Looking back, there were signs about 5-7 years before. Never heard of CMT until they told me I had it. I have days when I want to just stay in bed and not even try anything, and I get tired more easily than I ever used to at too early of an age (much too young to feel this damn old...) I had to take a non voluntary disability retirement from law enforcement about three to eight years before I planned to. Iam, however, still alive. I have a wonderful wife and family and friends. My point is, after the long way around, look for what you can still do, and look for the positive. And if you knew me, that alone might crack you up... Anyway, I hope you're doing ok.
@@cmcd1008please don't mind me asking this. Have you passed this condition on to your children?? I got married recently and was diagnosed with CMT Type 2A2A. I am worried ☹️
We created this video for our study about how #charcotmarietooth impacts people's daily lives.
Bethany's message is so inspiring, we've shared it everywhere, again and again! Mark her words! #CMT #rarediseases #research #inspiration
For more of Bethany's work with us and the CMT&Me app, watch her tutorials here: ruclips.net/p/PL3Lg4i94ihso41yWaxRqSSHEvkG1eO0YN
Well said. ❤️❤️
hello ! I have cmt . I come from Taiwan
Hello Jakuo! It is so cool to meet you! :-)
@@BethanyMeloche hello thanks u share so many good information