| Popis: |
Duchenne muscular dystrophy (DMD) is a rare inherited disease. Most patients are unable to move independently and rely on respiratory support before the age of thirty. They suffer from contractures, cardiomyopathy, and osteoporosis. Many adults with DMD experience severe pains daily and have a limited social life, compared to healthy peers. Adult patients with DMD are satisfied with life, see themselves as happy and independent. Care providers rate quality of life lower than the patients do themselves. This review aims to help clinicians be aware of this bias when considering invasive and life-prolonging procedures. |
