A face for a hidden disease
Bernadette Scarduzio, known to everyone as Bern, is one of the most recognizable faces of CMT. She has CMT type 1A, the same form that ran through her family for generations. Her father had it, his father had it, and so did many of his brothers and sisters. Bern was diagnosed at eight or nine years old, but for years her family kept it quiet. "My parents hid it because of the possible stigma involved," she has said.
Growing up with CMT was isolating in another way too, because so few people had ever heard of it. "No one knew what it was, not even doctors. I had to do a lot of explaining to countless medical professionals to get the care and treatment I needed."
Living with CMT
Over time the disease moved from her hands and feet through the rest of her body. She wore leg braces by her early twenties and later moved to a wheelchair, and she has been through more than two dozen surgeries on her hands, feet, ankles, and hips.
The hardest part, she says, is the everyday. "Things that most people don't think about, like going to the bathroom, letting the dogs out, eating breakfast, putting on makeup, doing my hair, putting on shoes, getting dressed, taking a shower." Some days those small battles are the whole day.
How she keeps fighting
What keeps her going is a routine she has built and refuses to give up. She swims several days a week in warm water, where the buoyancy lets her walk and run in place and takes the pressure off her joints. She adds land therapy, massage, and meditation, and leans on the people around her.
My CMT is progressing, but I keep on fighting it with pool therapy, land therapy, meditation, a good laugh, amazing family and friends, and my dogs.
Bernadette Scarduzio
The documentary
In 2008, a filmmaker asked if he could document her life. What began as a small project became the first full-length documentary on Charcot-Marie-Tooth disease. Filmed over four years by Josh Taub of Run Amuck Productions and funded by the Hereditary Neuropathy Foundation, Bernadette follows a young woman in her prime as she goes from playing sports to depending on a scooter and help with daily life, and from patient to advocate.
It premiered on September 17, 2013 at the ArcLight Cinemas in Hollywood, with roughly 200 people in attendance, many of them living with CMT and traveling from across the country. Bern and the film had one goal, to make CMT a household word.
Becoming an advocate
The film turned Bern into an advocate, and she never looked back. She became a national spokesperson for HNF and spent years raising awareness and funds, including sitting on public policy panels at the CMT Summit.
I've always felt awareness is our key to a cure.
Bernadette Scarduzio
Bern is also a certified personal trainer who once dreamed of opening her own water gym, and she writes poetry about life, love, and not taking things too seriously. Her advice to anyone facing something hard sounds a lot like her.
Take care of yourself as much as you can. Have faith that you're meant to be here for a reason. Everyone is given something they have to overcome, whether it's physical or emotional. Be strong. Some days you feel great and other days you don't have that much strength. Everything happens for a reason. Just believe.
Bernadette Scarduzio
