Recently, Americans across the United States mourned the passing of Hollywood legend Jerry Lewis. Although Lewis made a name for himself and enjoyed a long career as comedian, singer, actor, director and writer, he is perhaps best known as a humanitarian for his work fundraising for research for muscular dystrophy.
One of the more common forms of the disease is Duchenne muscular dystrophy, which involves progressive muscular degeneration and weakness in the human body. The illness is caused due to the absence of dystrophin in the body, a protein that protects the body’s muscle cells from degenerating. The disease typically affects the pelvic area, shoulders and thighs of boys between the age of three to five. The affected area often moves on to the arms legs and trunk after, and by a person’s early teenage years may affect respiratory muscles and the heart as well.
Due to recent advances in respiratory and cardiac care, victims of Duchenne muscular dystrophy may now live well into their adult years, with some living into their 40’s or 50’s. Previously, the average life expectancy range did not extend beyond teenage years. Doctors, scientists and researchers are now looking into gene therapy, exon skipping and gene repair among other strategies in an effort to control and treat people who suffer from the disease.
Minors who suffer serious disabilities such as muscular dystrophy may be entitled to Supplemental Security Income for their illnesses. Although these payments are not designed to fully cover medical expenses or rehabilitation costs associated with the illness, they may help provide some financial relief for families caring for a young loved one suffering from the disability.
Source: The Muscular Dystrophy Association, “Duchenne Muscular Dystrophy,” Aug. 21, 2017