How Much Do You Know About CMT?

Top Ten Reasons I’m Talking About CMT in September

10. When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this:

Let’s stop the nonsense. I’m looking for reactions of recognition!

9) Besides having cavities and crowns, there is absolutely nothing wrong with my teeth or Yohan’s (Thanks Dr. Tooth) Dr. Howard Henry Tooth discovered this progressive neuromuscular disease with Drs Charcot and Marie and just had to have his last name attached to the end of our disease: Charcot-Marie-Tooth.

 

8. Jean-Marie Charcot is known as the father of modern neurology. He is the greatest man of all time. And, we will never forget him because his name got stuck on a whole bunch of different diseases. It only creates confusion!

 

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Will the real Charcot, please stand up, please stand up!

 

Here is the short list:

7. Let everyone know that CMT does not stand for:

Country Music Television

Childen’s Musical Theater

 

 

Certified Massage Therapist

 

 

6. Give others ways to remember the name, pronounce like:

\(ˌ)shär-ˌkō-mə-ˌrē-ˈtüth-\

or

 

 

 

 

 

or

 

Just an FYI: you do not have to have a collection of shark teeth to be part of the Charcot-Marie-Tooth Association 🙂

 

 

 

 

5. And, if you feel awkward about starting the CMT discussion, you and your animals can dress up like a shark – it’s fun and you can easily get the point across! Or, just paint your horse with non-toxic paint. People will ask…..trust me.

 

 

 

 

apple

 

4. Tell people you wear braces and when they look at your mouth, flash them with your legs and show off your AFO’s (braces)!

 

 

 

 

 

 

 

 

3. Wow your friends with your knowledge of medical jargon. Use CMT-related words like:

peripheral neuropathy, autosomal dominant, hereditary motor and sensory neuropathy, dorsiflexion, plantar flexion, pes cavus, myelin, axons, exome sequencing, orthosis, etc…… They’ll be stunned by your brilliance.

 

2. The CMTA makes it fun to celebrate and talk about CMT during CMT awareness month We have an entire interactive site dedicated to CMT awareness: https://www.cmtausa.org/one-voice-awareness-month-2017/

On the Awareness Month site, you can read CMT about and download this super informative document with friends and family:

What_Is_CMT_single_499x645-232x300 (1)

You can also learn how to install the CMT Twibbon on your Facebook profile picture:

 

My mom and me!

 

 

 

 

 

 

 

 

 

Give your friends and family the CMT Quiz!

https://www.surveymonkey.com/r/CMTAwarenessQuiz

 

Here is an example of the first couple of questions:

1. If you suspect you have Charcot-Marie-Tooth disease, who would you go see?

A marine biologist
A dentist
A psychiatrist
A neurologist

2. What year was CMT discovered?

 

Share Your Story, and much, much more! Be sure to check it out! 

 

 

 

 

  1. CMT Awareness Month finally gives you the opportunity to promote CMT awareness, acceptance and knowledge. I truly believe that education is power. Let others know about the fatigue, the clumsiness, the high-arched feet, the braces and everything else that comes with CMT. Be factual. Own it and don’t let it own you.  If you accept your CMT, others will too. Now go forth and talk, write, post about CMT. You just might get a sense of relief!

 

4 thoughts on “How Much Do You Know About CMT?

  1. Elizabeth, you are a talented teacher with verbal flare! Lighting strikes your brain and you are off with important information. GBS, Guillain Barre Syndrome, has multiple variants also.
    Some days, I think I have all the variants piled on me as I struggle with the pain aspect. For thirty years they have recommended all the drug therapy you so,carefully crafted in your article. For thirty years it has not helped the majority of people.

    You and your family are impressive for the funds you have raised for CMTD. YOUR GIFT OF DEVOTION TO THE CAUSE IS SPLENDID.

    WITH GREAT APPRECIATION, LOTS OF LOVE,
    BETTY MOUSEL

    Liked by 1 person

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