PALMETTO BAY, Fla. – According to the U.S. National Library of Medicine, there are more than 600 neurologic diseases.
A little known condition that, although rare, is one of the most common inherited neurological disorders.
When Gladys Levy was a young girl she was diagnosed with a disease that damages the peripheral nerves around the spinal cord and brain called Charcot Marie Tooth, or CMT.
“Around two years old I believe I started walking and I would fall a lot and my mom got concerned and she started taking me to different doctors. It took a few years to diagnose me with something. A geneticist was able to immediately look at me and say ‘she has CMT’,” Levy said.
Dr. Mario Saporta, a Neurologist at UHealth-University of Miami CMT Clinic of Excellence, said the name stems from the three doctors who discovered the disease which affects an estimated 126,000 Americans and 2.6 million people worldwide.
“We now have identified over a hundred different genes in the human genome that if mutated will cause peripheral nerve dysfunction, neuropathy and CMT”, he said.
Since there is no cure for the disease, Saporta said treatment is focused on keeping patients as functional as possible in their daily activities.
“So physical therapy, occupational therapy, bracing, genetic counseling, diet, is really what we can offer patients and it does make a huge difference in their quality of life,” he said.
Levy said, “I’ve spent my entire life learning how to adapt and live with what it is that i have.”
Her diagnosis led to genetic testing for other family members, some of whom were positive for one of the gene mutations responsible for CMT.
Although CMT is progressive, Levy hasn’t let it get in the way of her dreams.
“I’m just hoping to progress and continue to do the things that I love to do. I would love to be able to continue to bake, to have that bakery grow and some point. Other than that, I’m just moving forward,” she said.
Levy is now working with the CMT Association to raise funds and awareness.
She donates some of the profits from her bakery business to the association and is spearheading efforts to hold a fundraising gala later this year.