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.

While the rest of this post was written on my old blog back in 2015, with CMT awareness month beginning the day I officially launched my updated site, I wanted to make sure to include CMT content in the transfer from the old blog to the new one. While most of my following was gained by sharing weight loss-related content, I regularly hear the call to share more about my life with this disability, since it’s rarely featured in my day-to-day content. I can’t begin to tell you how much joy it brings me when I get a message from someone who said they heard mention of CMT that day and only knew what it was because of me. Ultimately, I was given a platform to engage with the world, so it’s my duty to bring awareness to this “most common disease that no one has heard of.” Let this post be the start of a larger string of CMT content.

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 affects 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 backward from what they knew of CMT.  While each case has its 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 the 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 my 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 everyday life.

Having to wake up and deal with CMT every day is an experience that varies from 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 when 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 them is better than feeling defeated by them.  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.