Here’s a very interesting post on Psychology Today by Jennifer Jo Brout, PsyD, about the need to raise public awareness around specific muscular dystrophies in the age of genomic medicine.
Dr. Brout’s grandfather, who had FSHD, co-founded the Muscular Dystrophy Association. When she was diagnosed recently with FSHD, she became curious about the history of MDA, and particularly about the organization’s activities with regard to FSHD. She notes that in early days, when the cause of muscular dystrophy was not known, it was understandable to think of it as a single disease. But as scientists identified some 50-plus hereditary muscle conditions–each with signature symptoms, unique genetic cause, and targeted treatment strategy–it has become important to make distinctions.
“We are in the age of genetic revolution,” she writes. “Some of these diseases already benefit from some treatment that impacts functioning positively, although not many. However, we have more hope now than during any previous decades. We have come a long since the 1950s! Given the understanding that we aren’t dealing with a single disease but many, with multiple and complicated causes, it is essential to attend to the way muscle diseases are classified.” Not doing so, she says, can impede fundraising and advocacy.
Read her full article here: What Is Muscular Dystrophy in the New Millenium?