Charcot Marie Tooth Disease

[livingwith]

My daughter was diagnosed with cmt at 16 months old, she is now 13. She suffers from dropsy foot with high arches. She stopped wearing her orthotics as she experienced more pain wearing them than not wearing them. As of the last 8 months she now suffers numbness and pins and needles in both her feet. As a mother it very distressing not to be able to ease her pain. She often tells me her hands feel like they are floating. She also has nystagnus of the eyes(wobbly eyes) so she has to look sideways...Read the full article

[mema07]

I am so sorry to hear that your daughter has been diagnosed with this. I too, have CMT, but I have type 2. I am 39 yrs old and was diagnosed when i was 24 and was told that i would be in a wheelchair within 10 years,and PRAISE GOD! I AM NOT! yet nor am i looking forward to being in one. I do have good days and bad ones as well. I too, have the curled toes, and i have learned to walk with them, they are painful,and "ugly" to me. I didn't get diagnosed til later on in life, so i think it is good that you know ahead of time and how to "deal" with it as best as possible. I have 2 kids whom will not get tested, although my daughter when she had her baby was concerned about the baby,so she had an ultrasound and they told her that really they couldn't tell her anything with the baby still being inutero. She was concerned that her baby could have it but yet she still has yet to be tested herself. I guess that if you don't know it doesn't happen, in their eyes. I see that you said your husband has it as well, i would be interested in hearing his story if you are willing to share it. If not on this board, you may reach me at [moderator note: e-mail addresses have been removed]. I will look forward to hearing from you, hopefully. Are you aware of the CMTA (Charcot-Marie-Tooth Association)they send out newsletters about what is going on with others that suffer with this disease. Well,thanks for the post, and possibly look forward to hearing from you..
Sincerely yours,
Mrs.Tracey Edmundson

[mema07]

I am so sorry to hear that your daughter has been diagnosed with this. I too, have CMT, but I have type 2. I am 39 yrs old and was diagnosed when i was 24 and was told that i would be in a wheelchair within 10 years,and PRAISE GOD! I AM NOT! yet nor am i looking forward to being in one. I do have good days and bad ones as well. I too, have the curled toes, and i have learned to walk with them, they are painful,and "ugly" to me. I didn't get diagnosed til later on in life, so i think it is good that you know ahead of time and how to "deal" with it as best as possible. I have 2 kids whom will not get tested, although my daughter when she had her baby was concerned about the baby,so she had an ultrasound and they told her that really they couldn't tell her anything with the baby still being inutero. She was concerned that her baby could have it but yet she still has yet to be tested herself. I guess that if you don't know it doesn't happen, in their eyes. I see that you said your husband has it as well, i would be interested in hearing his story if you are willing to share it. If not on this board, you may reach me at [moderator note: e-mail addresses have been removed]. I will look forward to hearing from you, hopefully. Are you aware of the CMTA (Charcot-Marie-Tooth Association)they send out newsletters about what is going on with others that suffer with this disease. Well,thanks for the post, and possibly look forward to hearing from you..
Sincerely yours,
Mrs.Tracey Edmundson