‘It’s very rare’: 4 The Record learns about effort to raise awareness for Charcot-Marie-Tooth disease
On Sunday morning, 4 The Record’s Lily Coleman spoke with Linda Dobosh, a Pittsburgher and Charcot-Marie-Tooth disease patient, to learn more about this rare neuromuscular disease
PITTSBURGH —
On Sunday morning, 4 The Record’s Lily Coleman sat down with Linda Dobosh, a Pittsburgher and Charcot-Marie-Tooth disease patient, to learn more about the rare neuromuscular disease.
“It’s very rare. It’s slowly progressive,” Dobosh said. “There’s an estimated 135,000 across the United States. In the Pittsburgh area, there is around 900. And across Pennsylvania, it’s approximately 5,200 people that have it. So it’s very rare and not a lot of people are familiar with it.”
Dobosh will lead the annual Pittsburgh Walk 4 CMT at the North Fayette Community Center on Sept. 5.
Coleman asked Dobosh what it would mean to her if there’s a cure one day.
“That would be fabulous,” Dobosh said. “Because I worry. I worry about my children and grandkids if I ever have any. And my nieces and nephews and great-nieces and nephews, I worry that they would have to go through the same stuff that I’m going through, and I know how difficult it is. So I would like to see that they have a better future.”
WATCH THE FULL INTERVIEW IN THE VIDEO PLAYER ABOVE