From a young age, Rivka knew that there was something different about her compared to her 3 siblings. That difference was Charcot-Marie-Tooth disease.
Meet Rivka, a young adult living with CMT1B in New York/Manhatten who is preparing to participate in this year’s ‘Great Saunter’, a one-day, 32-mile urban hike along the Manhatten shoreline. Every May, this event brings together thousands of people to celebrate individual effort and the physical and mental challenges that come with completing such a feat. This year, 12 people will be amongst those thousands, representing Rivka, the CMT community, and the CMT Research Foundation.
GROWING UP RARE Rivka is a de nova case, meaning that her CMT was caused by a spontaneous gene mutation, not a genetic inheritance. Being the only person in her family with a rare disease wasn’t easy on Rivka. Despite her parents’ best efforts to support her, Rivka found herself rebelling against wearing AFO’s and supportive sneakers, refusing to use a walker or aid to help her walk. She tried her hardest to mask her symptoms, no matter how difficult it was. Fitting in with her able-bodied peers was her priority; Rivka didn’t want to feel left as an outsider.
LIVING WITH CMT In her final years at college, Rivka learned the importance of accepting accommodations for her disability; it allowed her to continue participating with her peers.
“It wasn’t easy at first. I needed to know what I needed before I could ask for it. Overtime, that got easier and it led me to finally starting to accept my disability more.” This acceptance led to living a life that is supportive of her CMT and its symptoms. Rivka currently goes to physical therapy twice a week, regularly visits the gym, and walks 10,000 steps a day. She also loves to hike with the help of her partner, friends, and family. This interest in movement and spreading advocacy led Rivka to connect with the CMT Research Foundation for the ‘Great Saunter’.
“Despite the challenges CMT presents, I’ve always had a love for walking. It’s something I truly enjoy and find empowering, even though it can be difficult at times. When I learned about the opportunity to represent CMT at the Great Saunter—an event that celebrates walking and challenges individuals to complete a long-distance trek through Manhattan—it felt like the perfect opportunity to combine my love for walking with my desire to raise awareness about CMT. By participating in such a physically demanding activity, I hoped to not only challenge myself but also to educate others on CMT and the need for continued research and support for those affected.”
CMT affects 3 million people worldwide, yet there is currently no treatment or cures; the CMTRF and Rivka are working to change that. Support Rivka’s advocacy and fundraising efforts for CMT here.
