Julie is a 39-year-old mother of three, a graduate student in counseling psychology and an active member of her neighborhood, her church, her children’s schools and the LGMD2i community.
She was diagnosed with LGMD2i in 2003 yet had symptoms of the disease from early childhood. She grew up in a large, busy and loving household with her parents and 5 siblings. “I was always around kids and life was awesome!” She remembers always being slow as a child, the last one when running, playing and riding bikes with her siblings and schoolmates. She had trouble climbing stairs as well but despite consulting many physicians, there was never an explanation. She recalls feeling humiliated in school– ridiculed by her physical education teacher who claimed she just wasn’t trying hard enough. She internalized the criticism, pushing herself to exercise, diet and go to great lengths to ‘get in shape’.
“It was at least 10 years of going to different doctors and just being told, “You got to try a little harder.” Finally, during a family trip, when she was unable to walk down a slope to a waterfall, her family saw clearly that there was something wrong. She was referred to a Muscular Dystrophy Association clinic and ultimately given a diagnosis of muscular dystrophy. At that time, though, she was incorrectly diagnosed with FSH (facial scapular humeral dystrophy). Sometime later, when pregnant with her first child, she was diagnosed with LGMD2i.