Living With Charcot-Marie-Tooth Disease

Scarduzio and her brother, John, live with Charcot-Marie-Tooth disease, or CMT, a degenerative neurological disorder they inherited from their late father, John Sr. While Scarduzio inherited a severe form of the disease, she said she also inherited her father’s strength and courage.

CMT causes nerve damage throughout the body. Scarduzio described her diagnosis, saying, “CMT is progressive, so every couple years I’m noticing I’m not able to lift up my arms as much or I’m fatiguing more.”

Scarduzio began using a scooter for mobility, which eventually led her to adapt her home. For a short time, she was able to drive, but as her disability progressed, she feared she’d lose the ability to drive.

Life Before a Wheelchair Accessible Vehicle

Before driving an accessible vehicle, Scarduzio drove a Jeep Compass. While she enjoyed her vehicle, she eventually stopped driving it because of the progression of her disability. Her condition caused her to be unable to feel the brake and gas pedals, and she had a hard time gripping the steering wheel.

Unable to use a wheelchair due to weakness in her hands, Scarduzio relies on a scooter for mobility. Before she had an accessible vehicle, she often depended on family and friends to transport both her and the scooter.

She described the challenges that came with that arrangement, saying, “It was hard on me because I had to ask my family and friends. They would have to put the scooter in their trunk, and I would have to watch them struggle because it’s not easy. It’s not fun watching other people struggle to take you out for an hour or two. I always felt like a burden.”

Because getting out of the house was challenging, Scarduzio often felt it was easier to stay home, which in turn made her feel isolated. She soon realized she needed an accessible vehicle. "The only way I could go anywhere is if I had an accessible car,” she said.