There’s power in being vulnerable about CMT struggles

How vulnerability enabled one CMTer to have a big impact on his community

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by Young Lee |

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For much of my life, I avoided talking about Charcot-Marie-Tooth disease (CMT) and how it affects me. I didn’t mention it to the personal trainers I worked with, and most of my teachers and college friends were unaware I had it. I even went so far as to perpetuate assumptions that I was wholly uninterested in physical activity. I often felt I’d rather appear ignorant or aloof than physically weak.

However, I’ve come to realize that there can be advantages in opening up and allowing others to see how CMT affects me. Indeed, there can be a profound power in vulnerability.

I was recently reminded of this fact when George Simpson, director of communications for the CMT Research Foundation (CMTRF), told me the story of his friend and colleague Peter de Silva and how he came to be a CMTRF board member and chair of the CMT1A Endgame campaign.

De Silva, a CMTer himself, has long been part of the effort to increase CMT awareness and advocacy. Until recently, however, de Silva had purely been a donor. Granted, he was always a significant donor, but despite knowing he had skills to offer the community, he was reluctant to take part in anything that would result in him going public about his CMT struggles.

For a long time, he felt insecure and distanced himself from anything requiring vulnerability. De Silva, after all, had a strong professional image. He’d held C-level positions at various financial firms and was accustomed to keeping his struggles private, only showing others a brave face.

But over time, de Silva had a change of heart and began to view vulnerability differently. Now, he actually incorporates it into his personal brand and encourages others to do the same.

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Through an email correspondence with de Silva, I was able to learn more about how he harnesses vulnerability to better his personal and professional life.

“The best leaders are able to show vulnerability at times,” de Silva wrote. “It helps others see the leader as a human being with failures and flaws just like them. It took me almost an entire lifetime to understand this. Today, I am comfortable talking about my CMT and other vulnerabilities as I recognize that others see it as a strength to be open about these sorts of things versus a weakness.”

A professional headshot shows a man in a dark blue suit jacket and light blue collared shirt. He has salt-and-pepper hair and is smiling at the camera.

Peter de Silva, CMTRF board member and chair of the CMT1A Endgame campaign. (Courtesy of Peter de Silva)

Though I’m not a leader in any professional capacity, de Silva’s words ring true to me. When I allow myself to be more open, I feel that I’m able to live more authentically. This kind of vulnerability has released me from the binds created by my own ego, thus allowing me to try my hardest in my physical endeavors, knowing that even failure won’t break me. And because the best friendships are always built on trust, being vulnerable with those closest to me has only strengthened our bonds.

These days, de Silva has completely changed from someone who once hid his CMT struggles. He’s now a face of CMTRF and leverages his personal story, leadership expertise, and networking skills to expand the foundation’s reach and help fund research for a cure.

It’s a personal evolution de Silva credits to the support of his close friends and the way CMT has affected his family members. His story offers hope to many, especially after seeing the impact of the fundraising campaign he now chairs.

And that’s what I find particularly notable about de Silva. His ability to spearhead one of the greatest fundraising efforts in our community is due in no small part to his ability to embrace the power of vulnerability.

And though I don’t have nearly the same expertise or network as de Silva, his example encourages me to consider what I can achieve by taking similar actions in my own life. After all, I’ve already found a supporting and welcoming community when it comes to my disability — not everyone is so fortunate.

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 Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.


Marian Stsbley avatar

Marian Stsbley

I am 87 years Old. I was diagnosed @ 70 but was told I was in denial. I share my handicap with grace & confidence, . The most important in life be positive. I take one day @ time & wake with a happy joyful day in store. Poor me just does not work in my vocabulary. I just want to see research find a cure for children & young adults. My research @ John’s Hopkins showed mild case of polio as a child.whicheliminated further research.


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