MDA Summer Camp: The Summer of a Lifetime for Muscular Dystrophy Patients
Muscular dystrophy is an umbrella term used to describe a group of potentially debilitating and progressive neuromuscular diseases that cause gradual muscle wasting and eventual death. Duchenne muscular dystrophy is the most common as well as the most severe form that strikes one in every two hundred individuals, many of whom live well into their 20s or 30s before being completely overtaken by the disease. As DMD is a genetic condition whose inheritance pattern is recessively linked to the X-chromosome, it is more commonly seen in males than in females. Duchenne muscular dystrophy causes muscular wasting by altering the gene responsible for the production of a protein called dystrophin, which keeps the muscles intact. With the body unable to maintain muscle form and structure, atrophy sets in and is ultimately irreversible.
“Muscular dystrophy” is a very broad term that describes a group of debilitating and progressive neuromuscular diseases. Gradually, they cause muscle wasting and, ultimately, death. The most common and severe type is Duchene muscular dystrophy. The genes responsible for the dystrophin protein production are altered by this disease, thus inducing muscle wasting, which leads to atrophy setting in. Corticosteroids, heart medications, braces, low-impact exercises, and mobility aids are a few modes of therapy that help to maintain muscle strength. People with DMD not only have physical limitations, but also find it difficult to interact with others, making them feel isolated and depressed. A child with DMD cannot express themselves effectively through motion, and this leads to frustration. Such children may also lose their sense of autonomy as well as their self-esteem since they often require external assistance. It is of paramount importance to keep an honest and open communication to help them cope, especially boys who are too young to deal with it. Allowing them to speak their mind about their illness can be very beneficial in helping a child to let go of their negative emotions. There are many stereotypes about chronic illnesses; for example, this disease is thought to be a condition where the person is bound to a wheelchair or finds it difficult to perform daily activities. However, this may not always be true with DMD; some individuals can be affected in other ways and may not even show physical symptoms. One of the ways we can help them in their battle is by destroying such stereotypes.
For kids with muscular dystrophy and other degenerative muscular diseases, the Muscular Dystrophy Association provides an MDA summer camp. At this camp, muscular dystrophy is just a medical concept; here, kids can enjoy adventures, increase their self-confidence and self-esteem, build lasting friendships, and develop independence. They are taken care of by volunteers who are trained, caring, and loving. It gives these children a lifetime of memories and their parents a chance to recharge.
There are endless games and fun activities, such as adaptive sports, fishing, swimming, camp dances, horseback riding, and arts and crafts. The children are given the opportunity to discover themselves, and they cultivate a positive mental attitude to help overcome the effects of their disability. They can dance, laugh, sing, and express themselves in a safe environment; at this camp, the children feel at home. They are surrounded by other kids just like them, so they know they are not alone in their affliction. Many alumni of this camp consider this to be a pivotal experience for them. They achieved things they never thought they could and made lifelong memories; they realized they could overcome their fears. Through this camp, they came out of their shells.
Volunteer work can also help them, as well as gaining more information about the disease. With this knowledge, it is easier to offer such individuals assistance; it is of vital importance to spread awareness about how this disease affects people in different ways.