It's not about teeth

Driving to a medical appointment 

with my wife

Charcot-Marie-Tooth [CMT] disease. I often hate the name more than the symptoms I endure from it. The inherited peripheral nerve disorder was discovered by Frenchmen Jean-Martin Charcot and Pierre Marie along with Howard Henry Tooth of England in the late 1800s.

The Frenchmen and Mr. Tooth bit me in the ass for the first time four years ago. I now get around with a cane, a walker and an electric scooter during special outings. The disease causes excruciating pain in my lower back, feet and hands. Those details I will share in a future blog because I want to use this time to bash Mr. Tooth for causing confusion about CMT.

Many individuals and even doctors have never heard of the disease. Some doctors have even told frustrated patients it’s a “teeth disease,” according to a few friends with the disease. And CMT happens to be the most commonly inherited peripheral nerve disorder, according to the Muscular Dystrophy Association. It affects about 1 in 2,500 people. That means many small Midwestern towns, for example, with a population of that amount will have at least one person with CMT.

Why aren’t more doctors aware about it? I often wonder if Mr. Tooth’s last name is to blame. Doing a little research, however, led me to find other numerous diseases and syndromes with crazy names. For example, Dandy-Walker Syndrome brings to mind someone with a “hip-style of walking.” The disease is actually a brain disorder and is named after its discovers Walter Dandy and Arthur Earl Walker.

Take the name and ego out of disease titles and disorders and the medical field will come up with more names like Pseudopseudohypoparathyroidism, which is a bone disorder. Try saying that one to a friend or a person in the medical field. Maybe the solution is to name diseases and syndromes with a title that echoes its symptoms more. I like the name Saturday Night Palsy. This disorder involves a person in deep sleep who often lays on their arm causing injury. It often occurs with alcohol intoxication, according to medical sites.

In my quest to bring about more awareness of CMT, I ordered an ink stamper with the words “Find a cure for Charcot-Marie-Tooth disease.” I now stamp all pieces of mail leaving the house.

I recently was about to do something illegal with the stamper, but my wife, Emily, put a stop to it quickly. I told her I was going to place a stamp right above the men’s pisser when I go to the restroom at the pain clinic at Rush Hospital again.  “Every male doctor will see it,” I told her with enthusiasm. “It will make them more aware and may look it up on the web. Maybe you can stamp one in the women’s bathroom.” She said “wrong idea because they will figure out it was you. They don’t have a lot of patients with CMT.”

She remembered that my doctor informed us that the bustling clinic only treats one other individual with CMT. I needed to go to a pain clinic because I had a particular bad case of the disease, which caused pain after the nerves at the bottom of my spine became swollen and could not heal themselves.

What’s next I thought for getting the word out about the disease. I recently decided to start working on forming an organization that informs people in the medical field about the disease. And the first thing I will do is make them their very own ink stamper with the words “CMT: It has nothing to do with teeth.” Where they decide to place a stamp is up to them.

-- Joseph Ruzich has Charcot-Marie-Tooth disease and has been working in the journalism field for almost 20 years now. He is 40 years old and lives with his wife, Emily, in the western suburbs of Chicago, IL. You can comment at the bottom of the story or email me at josephruzich@gmail.com