Pinalben “Pinky” Patel, 28, was born in a village in Western India and moved to the United States with her family four years later. She already was starting to show symptoms of Friedreich’s ataxia (FA).
“My aunt and cousin took me trick-or-treating for the first time,” she says. “When we got home, my aunt complained that I kept falling down on purpose for attention. A couple years later my...
Jason Adamo’s life isn’t markedly different from that of any other teenager. The 17-year-old high school junior has a part-time job as a cook at a restaurant near his home in Port Charlotte, Fla., and enjoys flying radio-controlled model helicopters in his spare time.
But had it not been for the alertness and persistence of his mother, Katherine, an intensive care nurse, things could have taken a...
In this issue: An MDA-supported gene therapy safety trial gets federal approval to move forward ** Sudden cardiac death found in people with MMD2, and those with MMD1 often require a pacemaker ** Etanercept shows promise in mysasthenia gravis
Frequently asked questions about cardiac problems in neuromuscular disease
Part 1 of this series (Quest, Vol. 6, No. 2) addressed cardiomyopathy, the degeneration of heart muscle that often occurs in many neuromuscular diseases.