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Neurology Now:
doi: 10.1097/01.NNN.0000453360.08885.f6
Departments: Speak Up

Life Is Happening Now: I'm not waiting for a cure for Charcot-Marie Tooth to do the things I love.

Ricci, Vittorio

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Vittorio Ricci lives in Boxford, MA, with his parents and younger sister, Emma. He is a junior at Masconomet High School in Topsfield, MA. In August, Vittorio will speak at a CMTA fundraiser for the in Gloucester, MA; in September, he plans to complete his 3rd triathlon and run cross-country.

I was diagnosed with Charcot-Marie-Tooth disease (CMT) in the summer of 2012, before entering my freshman year of high school. CMT affects the peripheral nerves, causing loss of muscle and sensation in the arms, hands, feet, and legs. Looking back now, I had symptoms of a neuromuscular disorder for many years before the diagnosis. I went to see a lot of doctors and had a multitude of tests: magnetic resonance imaging (MRI), electromyogram (EMG), nerve conduction, X-Rays, and blood work. CMT is considered an inherited disease, but there is no history of it in my family, and my CMT type is still unknown.

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I was fitted for an ankle-foot orthotic (AFO) for each leg. An orthotic is a brace, usually made of plastic, (or in my case carbon fiber) worn on the lower leg and foot to support the ankle and hold the foot in the correct position. I think I've tried them all: Allard Blue Rockers, Toe Offs, Noodles by Kinetic, and a pair so stiff I felt like Forrest Gump. I have a great orthotist, who helped me find a pair that work for me. (An orthotist is trained to help people who wear orthotics.) Last year, I think I saw my orthotist more often than some of my family members!

Before I knew I had CMT, I walked funny and beat myself up about it. I felt awkward and didn't have much confidence. Known as the shy kid, I never really talked to other people and only found solace in my friends from elementary school. But CMT forced me to confront my insecurities. I entered my first year of high school wearing AFOs and anticipated strange looks from my classmates. Some people assumed I was wearing shin guards, so I told them I made the varsity soccer team.

With my mom's help, I joined the Charcot-Marie-Tooth Association (http://cmtausa.org) and created “Vittorio's Circle of Friends” to track funds raised, share my story, and communicate with others. Things really took off from there. I was interviewed for the November issue of the CMTA Newsletter and wrote about being diagnosed with CMT (bit.ly/CMTA_VittorioRicci). Soon after, I was interviewed by our local newspaper about my experience completing a triathlon. Our family received a lot of calls. No one else claimed to have the same disease as me, but still, it opened more doors.

Last year, I spoke at my former elementary school and to my entire high school class of 350 students. We sold “Class of 2016” shirts with a CMTA logo on the sleeve. During health class one day, WHDH-TV Boston surprised me for a segment called “Class Act.” I explained CMT and talked about how supportive my classmates have been. A camera crew followed me around the cafeteria as I went about my “normal” day. I was late for my next class, but the teacher thought I had a pretty good excuse.

I was even invited to a private session of the Senate at the Massachusetts State House to receive a Resolution and Proclamation declaring September as CMT awareness month. In two years, I have helped raise $58,000 for the Charcot-Marie-Tooth Association. These opportunities have changed my life.

Sports continue to be important to me. I achieved a long sought-after goal of a 6:58 minute mile this track season. I've broken at least 10 sets of AFOs and I have a nice trophy case of the surviving braces in my room. At home, I ride mountain bikes and ski in the winter months.

My diagnosis of CMT has made me stronger and more confident. I keep going on annual visits to a specialty hospital to monitor my CMT, and my orthotist remains on speed dial for the time being. But my life is happening now, and while scientists look for cures, I'm not going to wait to do the things I love.

© 2014 American Academy of Neurology

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