COVER STORY By CHRISTINE UMBRELL
Orthotic treatment for muscular dystrophy remains an important factor in the patient-care equation
rthotists who treat muscular dystrophy patients are special practitioners. Those who understand the disease and who advocate on behalf of their patients to ensure the proper orthotic treatment plan can help their patients stay ambulatory for as long as possible—which can mean a longer lifespan and greater quality of life. However, as treatments have become more advanced in recent years, the role of the orthotist has become less clear. Muscular dystrophy patients suffer from a degenerative muscle disease affecting primarily boys. Those with Duchenne muscular dystrophy (DMD), the most common form of the disease, lack a protein called dystrophin, which helps keep muscle cells intact. In the United States, DMD affects approximately 1 in 3,500 live male births each year. Boys with DMD may notice symptoms as young as age 2 or 3 and experience muscle weakness progressively in the hips, pelvic area, thighs, and shoulders, and later the skeletal muscles in the arms, legs, and trunk. Until recently, these boys did not survive much beyond their teen years. However, recent advances in cardiac and respiratory care, in addition to steroid treatments, have led to a rising life expectancy; survival into the late 20s and beyond is becoming more common. Most DMD patients are treated at muscular dystrophy clinics throughout the country. These clinics host teams of specialists, which can include neurologists, cardiologists, dieticians, social workers, physical therapists, and others. Some of these teams include orthotists on staff; others refer out when the team recommends orthotic intervention. Orthotists provide critical services to DMD patients as braces help to keep tendons and muscles stretched, avoiding painful contractures, in addition to assisting patients in ambulation. But it’s a tough job: Not only does the orthotist need to help determine the bracing regimen best-suited for the patient; he or she must do so in conjunction with the treatment plan devised by the entire team and the patient’s parents.
APRIL 2013 O&P Almanac