What is CMT?

WhatisCMT

As some of you may or may not know, I have a physical disability called CMT.  It stands for Charcot Marie Tooth disease, and contrary to many people’s first impressions of the name, it has absolutely nothing to do with my teeth.

As my blog following begins to grow, I’ve been feeling compelled to try and do more with it.  While I’ve been searching for ways to expand my content, I feel that one of the subject matters I need to touch on more often is life with CMT.  I know that CMT is more common than people realize, and the general awareness of it is rather small compared to other diseases of the same severity.  I’m sitting here, a blogger that is getting hits every day, talking about all sorts of things, and yet, I’ve really only touched on CMT once, and it was in my personal story of life with CMT.  It’s time I try to raise just a little bit more awareness.  For starters, I want everyone to know a little bit more about what CMT is. Don’t worry, I won’t go all “in-depth research paper” on you.  I just want to share a little bit of information.

What is CMT?

As I mentioned, CMT stands for Charcot Marie Tooth disease.  This name came about because in 1886 the first doctors to describe it were Jean-Martin Charcot, Pierre Marie and Howard Henry Tooth (See? Nothing to do with our teeth at all 🙂 ).

CMT is an inherited disorder that effects the peripheral (outside the spinal cord: arms, hands, legs, and feet) nerves. Inherited meaning it isn’t contagious.  We won’t infect you.  The only people we have a chance of giving it to are our biological offspring.   CMT is just one kind of neuropathy, meaning simply that the peripheral nerves are damaged.  It currently affects about 2.8 million people worldwide of all races.

While I have always believed that CMT is a form of Muscular Dystrophy, others with CMT have recently been correcting me saying it is not.  While it is supported by the Muscular Dystrophy Association (thankfully), technically it is not MD.  If you have more info on this, let me know in the comment below, as this is still new information to me, and I want to learn more.

What are the Symptoms?

In my experience, the symptoms of CMT can vary greatly from person to person, even within the same family.  When I was diagnosed (around 1989 or so) CMT was typically a disease that didn’t show any symptoms until around puberty, when excessive clumsiness would start to be an issue.  My personal case was very different, as I couldn’t move a muscle when I was born, which was completely backwards from what they knew of CMT.  While each case has it’s own set of symptoms that may vary in severity, here are some common struggles that CMT patients may share:

  • Foot deformities (hammer toes, high arches)
  • Weakness of the arms, hands, legs, and feet.  Sometimes severe weakness.
  • Foot drop (unable to flex foot) resulting in a slapping gait when walking.
  • Loss of muscle in lower legs (leading to skinny calves)
  • Numbness of feet and hands
  • Difficulty balancing
  • Muscle fatigue
  • Neuropathy pain (I’ve just started feeling tiny bits of this in fingers, wrists, and toes.  To me, it’s like little electric shocks that come and go.  Many people have much more severe pain associated with this symptom).
  • Symptoms can progress and get more severe as time goes on.

Luckily, CMT almost never affects the brain or life expectancy.  Good news, indeed!

CMT does tend to get worse with age, and the increasing severity of the symptoms can result in a pretty serious physical handicap like being wheelchair bound.

Is There Treatment?

Currently, there are no treatments that can help cure CMT, but research is being funded to find one. Other types of treatment currently involve physical and occupational therapy, as well as orthopedic equipment, such as braces or shoe inserts for the legs and feet to help with every day life.

Having to wake up and deal with CMT every day is an experience that varies person to person and day to day.  Most days, I can manage on my own just fine;  no braces (though I do have little inserts for gym shoes), no nerve pain, and despite my extreme weakness, especially in my arms and hands, I can do most things for myself .  There are other days where my hands just don’t want to hold anything and I find myself clumsier than my “normal,” but that’s my life.  There are many with CMT who experience much worse than I do on a daily basis, and there are some who experience much better.  I see this just in my family alone.

Whatever the individual case may be, the fact is that we all have the CMT, and I want people to be more aware of it. I am more than happy to tell my story and answer any questions on the topic.  I’ve been an open book my whole life because friends ask because they want to be able to understand my struggle better. I have been blessed to have amazing and accepting people in my life who have made even the worst days with CMT not so bad. My family and close friends have joked with me about my daily struggles, because laughing about it is better than feeling defeated by it.  My friends frequently ask me to tell them when I need something or if they’re ever offending me without knowing it, and my husband is always helpful, loving, and supportive.

Ask me questions. Tell me your stories and struggles with CMT.  Start a conversation, friends.

If you want more information on CMT (and there is a LOT that I haven’t covered), the CMTA is a great place to start. If you want more insight on my personal story, you can check out my original post.  

 

 

11 thoughts on “What is CMT?

  1. Dixie Bailey says:

    Thanks for sharing your story with us Brianna. I’m so happy our Erik has found someone so lovely spend his “happily ever after” with. (I know you shouldn’t end with a preposition but it sounds better). 🙂 Mrs B

  2. Victoria says:

    Thankyou for this post! I too have CMT and although symptoms have been present for years, I have only recently gone and got a diagnosis. I also wish to use my blogs and business to help raise awareness and I finally feel like I have a real purpose in life other than being a wife and Mum (which are pretty important jobs)… If you would like you may check out my blogs (Maylilly Soaps and Positively Thirty – both through WordPress). One thing I cannot believe is how unkown CMT is. I can imagine a lot of people not knowing they have anything particularly wrong with them, and the later in life finding out they have a neurological disease. I feel compelled to shout it from the rooftops, but that may be because only recently my “tiredness” and “clumsiness” have been given some sort of validation, and I may not think about it as much once life has settled down and I think about regular things.

    • divaandthedivine says:

      It amazes me how common the disease actually in (relatively speaking) and yet how unknown it really is. People I encounter will ask me about the way I walk or something from time to time and I happily tell them all about this disease I have. It doesn’t keep me down, but it is a struggle that many others face too. I’m really glad I finally started looking online for groups and finding people that are like me. Since it runs in my family (grandpa, dad, and youngest sister), we’ve kept the jokes and the dealign with it just within the family. Once i looked for others, it is amazing how much I found and it’s great to feel not so alone!

      And I’m thrilled that you found me too. I love encountering fellow CMTers. I checked out your soap site. I’m a major girly girl and LOVE bath products. We should talk collaboration for both your product and CMT awareness. Great to “meet” you, Victoria. Let’s chat soon!

      • Victoria says:

        I have to make soap while my hands still let me lol… Actually my hands are terrible, but I have a good grip for the stick blender (used to make soap), and I just stick to small batches as too big is too heavy. Absolutely, we should have a chat re collaboration etc. I have been trying to find ways of incorporating CMT awareness it into my regular business blog, but then started the other, Positively thirty… Arggh I am not sure if 2 blogs was the right way to go now. I am at a point where I need to take charge and figure out what direction I want to take my business and blogs. You have seemed to have incorporated CMT into your blog really well.

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  4. P. O'Grady says:

    Imagine nearly 130 years since recognized and still it is relatively unknown. Not much help for us. I suggest you sort of edit these remarks. Then print them on a card we can give the knowledge to our friends. I enjoy reading them.

    • divaandthedivine says:

      That would be interesting. Having a little “Here’s the 411 on how my body works” card to hand out to friends and family. What a great idea 🙂

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