Can someone help my Husband? He's got Charcot-Marie-Tooth Disease (CMT)(Also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy (PMA)

Wow-it's amazing the varying degrees to which CMT can manifest itself. Even within the same gene pool (when I consider my own family). My husband and I are at somewhat of a loss as it relates to our son, who was diagnosed at age 4. He is now 14 and 6 foot 5 inches. His passion has always been basketball and he has played at very competitive levels since he was 9/10 (AAU national championship tourney - 10th place in 6th grade). Now he is playing at the 8th grade level and being tall has finally caught up to him. His disease has slowed his response time down - big time. He can't jump like others and in general, plays with pain...but never complains...but he is playing less and has recently lost his starting position. He's been pursued by some top private schools in the area - because he also plays football. While I clearly recognize that he is so fortunate to be able to do what he can, when I think of his dreams of a division I scholarship, it breaks my heart to think of what we should do from here. Do we continue to offer ways for him to work hard to overcome and become better - ? or simply settle. It's hard. Perhaps he should focus on one sport over the other - maybe his chances to not be limited in one are better than the other. It's complicated. don't get me wrong, there are WAY bigger problems in life - but I also don't want to miss a chance for my child to learn to deal with/overcome adversity... life is, after all, full of it. Any ideas?

Hi there,

I am Male 30 years old from India I am suffering from HMSN from last few years. Now I am ready to give myself for clinical trial related with HMSN/CMT. Even I am looking for research center where Stem Cell are used for treatment of HMSN/CMT.

Can anyone help me out? can mail me on [email protected]

Thanks for your valuable support.

I also have CMT. I was diagnosed with it 21 years ago during my first pregnancy. For the past 10 years I have been wearing AFOs to help me walk. Recently my legs have become so weak that it makes going up and down stairs extremely difficult. I am a teacher in a school with 3 floors and this is becoming a problem. I feel as though I am not doing my job properly. I have wonderful friends at work that take my class to and from their special classes so I do not have to contend with the stairs; however, I feel as thought I am taking advantage of them and they will grow to resent it. I am not ready to retire but I feel that this is interfering with my job duties.
I too have read about CoQ 10 and thought I would give it a try, it can't hurt.

My husband has been my rock. No one knows how much I truly depend on him. I just hope this disease skips over my children.

Sorry I did not give you any new advice or words of wisdom but it felt good to vent.

Best of luck to everyone.
Carol

I also have CMT. I was diagnosed at age 10 (I am now 39). My father, grandfather and several other members of my family also have had CMT. I also wanted to recommend joining CMTA. There a numerous resources there, as well as a forum to ask questions and join in discussions with others with CMT. It often helps to have contact with others who are going through similar things. You don't feel quite so alone. MDA has also been very helpful to me throughout the years (I am proud to be one of Jerry's kids). They have been able to answer questions, recommend doctors, prescribe orthotics, etc. -- they also offer clinics throughout the world. I want to commend and encourage those of you who are giving support to their spouses/family members/friends. My wife has been my strength and helpmate. Enough can never be said about the importance of that support. Some days are difficult to make it through without it. In the past couple of months I have heard about the advancements in possible treatments: absorbic acid (vitamin C), CoQ10, stem cell, and others. It has given me a renewed sense of hope.

God Bless,
Michael

Hi there.

I am a professional dancer and was diagnosed with CMT about a year ago. It has been and continues to be devastating. I can no longer do the thing that has (for better or worse) defined me for my entire life. I have found that what helps is making my day to day life rich and full. If/when I pause to consider the lifelong implications of this disorder, it is overwhelming and paralizing. It can also be upsetting to do too much research . . . when I read someone's blog about "wheelchairs are better than they used to be", I wanted to jump off a cliff. It is a constant struggle to be suspended somewhere between hoping for improvement and surrendering to the reality. My husband has been AMAZING. he does little more than sit with me when I cry, slow down when we are walking, and he shows me constantly how much he loves me. He has never said, "its going to be ok" or implied that somehow I dont think positively enough. He is just there and that is just right....

hello,
My husband has CMT, you have too be his support, I do not know if your husband is still working if he is more power too him, If he is the office of vocational rehabilitation can help him for short it is called (ovr). My husband has a lift chair they put in and also get ahold of the Muscular Dystrophy Association, they can help and give you support, also if he can not get his records from being adopted there is an emg that he can take(I call it the zap test), and it will show him what type of CMT he has. Love him as much as possible, my husabands hands now tremour and holding glasses are not a good thing we changed to glasses that have handles which help him because he can hold them. Welcome to the Charcot Marie tooth disease rollercoaster, long road coming but if you love him stand by him because he is going too need you.

Hi,

I have been doing research on CMT as well as my daughter is suffering from this progressive disease. She is just under 5 years of age, and was diagnosed of CMT in the early few months of her life. She cannot walk properly and frequently falls down if she walk without orthosis. She also have problems with her hands as she cannot grip things properly and have probem during eating and when working with fine motors.

As per my research, I am optimistic that with this pace of modern medicines and research, the CMT community would definitely hear a good news in a few years.
As an example, a gadget that has been invented which would by-pass the peripheral nervous system and would directly connect brain with foot to control movements. Here is the detail:
http://news.bbc.co.uk/2/hi/health/7669159.stm

Research is being done on how to regenerate neurons. Below is the detail on this:
http://www.ucalgary.ca/news/march2008/syed-nerve-cells

The gene-therapy technology is also advancing with some pace. It has already shown some positive results in curing other diseases. Below is the detail on it:
http://news.bbc.co.uk/2/hi/health/7369740.stm

Some latest orthosis for CMT patients:
http://www.biomech.com/full_article/?ArticleID=799&month=1&year=2005
http://news.bbc.co.uk/2/hi/uk_news/magazine/6153748.stm

Another bright prospect is stem cell technique. Detail on it is found below:
http://www.mayoclinic.com/health/stem-cells/CA00081

Some miracles that can be done through Stem Cell Research:
http://news.bbc.co.uk/2/hi/health/7435137.stm
http://news.bbc.co.uk/2/hi/science/nature/4155016.stm
http://news.bbc.co.uk/2/hi/health/7795586.stm

These are the few ones that I have at the moment. There is much research done in this field.

I hope this information would bring some relief to Michelle.

Best Regards,
Karar Haider