I Wish I Knew Others with CMT While Growing Up

What do I wish I knew about Charcot-Marie-Tooth disease (CMT) when I was younger? That other people have it, too.

I have had CMT as long as I can remember. I am not even sure when I was actually diagnosed — it seems as if it were always there. Growing up, the only people I knew with CMT were my family members. I had no idea that other people had it, too.

We went to a Muscular Dystrophy Association clinic for medical care, we saw a neurologist once a year, and sometimes we would see an orthopedist. Yet, I thought we were the only ones who had this disease. This might be because most doctors and others we knew at the time had no idea what Charcot-Marie-Tooth is. None of my friends or teachers knew about it. And it was always challenging to explain to others what CMT is and how it impacts everyday tasks.

My parents often had to explain CMT to doctors. I didn’t think that was weird at the time, but now I wonder why they hadn’t heard of it. It still shocks me when I visit a new doctor who hasn’t heard of it. I have since learned that medical classes barely discuss CMT. I often wonder why no one seems to know much about it, despite CMT supposedly being one of the most common hereditary diseases. If that’s true, why did I not know a single person outside of my family who had it?

I wish I had known while growing up that others had the same disease. I wish I had someone besides my family who understood the challenges and issues that CMT can create. I have learned that having a support system is important, and I think I would have benefited from that when I was younger.

Today, many different online communities exist for Charcot-Marie-Tooth, including on social media. I was a bit shocked to see how many others have the same disease as me. In fact, it affects about 1 in every 2,500 people in the U.S. It is reassuring in some ways knowing that I am not alone in dealing with this crazy disease. The online community has become a great source of information and serves as a sounding board for ideas and ways to deal with some of the everyday issues we face. Sometimes, it helps to share experiences with others who understand what I am going through. My family is a great support system, but it also is nice to have others who understand outside the family.

This is something I make sure to tell my son about Charcot-Marie-Tooth: Many others have it, and it is so important to know that you are not alone. Others do understand what you are going through.

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