Let’s Work Toward a Future Where CMT Awareness Isn’t Rare

When those of us with Charcot-Marie-Tooth disease (CMT) bring up our condition, a common response is, “So how does that affect your teeth?”

It’s a frustrating misconception, and we may find ourselves wondering if people with other rare diseases have to deal with the same lack of understanding.

But when it comes to rare diseases, CMT isn’t actually that rare. It affects one in every 2,500 Americans, making it much more common than several other conditions that have broken into mainstream awareness. And yet, most people outside of the disability community seem to have minimal knowledge and awareness of CMT.

This can be demoralizing and isolating. It can feel like we don’t have many advocates, like only a paltry few hear us when we cry out. And without widespread understanding of what we’re going through, we can only make so much progress toward increasing empathy and finding a treatment or a cure.

How can we rally people toward a cause when they don’t even know about it?

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February 23, 2021 Columns by Young Lee

Rare Disease Day Reminds Me of the Importance of Community

Every year on Rare Disease Day, which is the last day in February, I’m reminded that we don’t have to accept the lack of awareness. We can all be agents of change.

Many disability groups connect and listen to one another on Rare Disease Day. I see people celebrate the disability community, and it empowers me to help shape a more understanding, caring, and empathetic future. There is hope for change.

Rare Disease Day is an opportunity for CMTers to spread the word about who we are. We can spur ourselves to participate in larger discussions about disability, to listen and learn, and to spread love for everyone in the rare disease community. We’re all in this together and we need one another.

Let’s all strive to better love ourselves, appreciate our bodies, and celebrate our wins, not only on Rare Disease Day, but every day.

Let’s work toward a future where CMT knowledge isn’t rare, and we don’t have to follow up every mention of our disease with the obligatory “No, it doesn’t have anything to do with teeth.”

I look forward to that.

Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.