Spreading Awareness One Person at a Time

At the CMTA support group leader conference in Chicago, a speaker encouraged us to tell at least one person each day about Charcot-Marie-Tooth (CMT) disorder. Thereby, spreading awareness of this disease, which affects an estimated 5 million people worldwide, and yet most have never heard of. Today, while getting an ultrasound of my spleen, four more people learned about CMT.

A woman in the waiting room noticed my leg brace and asked, “Did you have an ankle replacement.” She explained that she was just wondering, because a good friend’s husband recently had an ankle replacement, and due to complications had to have the surgery again. Feeling lucky, because I haven’t needed foot surgery yet, after expressing sympathy for the man with the bad ankle, I told her I need the leg brace because I have Charcot-Marie-Tooth disease. I quickly explained the funny name is from the three doctors who discovered it. Then, I answered all of her questions, as we chatted some more about CMT.

While I worried it would be too nosy to ask why she was there, she began to explain how she ruptured a disc in her back from picking up boxes at work. Now, she needed her back x-rayed again, after falling on the ice and re-injuring herself. Before we could finish our conversation, the x-ray technician called her in to re-due one x-ray. When she returned to the waiting room, she smiled and said,”I told her all about you.”

I started to ask more about her back injury, when a different technician called me in for my ultrasound. So, we exchanged “Good luck.” My technician asked if I knew why the doctor had ordered the spleen scan (because my white blood cell count has been repeatedly low. Maybe my spleen felt enlarged too. I don’t know. I was afraid to ask). Anyhow, she also inquired if I had any other health conditions. Too tired to list them all, I simply said, “I have CMT.” She responded as expected, “Oh, I never heard of that.” As I helped her spell Charcot-Marie-Tooth, I explained that CMT is a genetic nerve disorder.

The fourth person, who learned about CMT today, the receptionist, who after verifying my insurance and date of birth, looked quizzically at my file and asked “What’s CMT. I never heard of it.” So, I explained that Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. While I had her attention, I showed her my hands, and told her that CMT is a degenerative nerve disorder. And no, there’s nothing wrong with my teeth.