Duchenne Muscular Dystrophy or DMD for short is a type of muscular dystrophy that causes muscle weakness and even muscle deterioration. This deterioration can occur in the heart and lungs and over time can become life threatening. There are other types of Muscular Dystrophy but DMD is the most common. Although girls can carry this disease and can be mildly affected by it, DMD is most common in boys. This disease has about 200,000 reported cases per year and is considered rare. This disease has a 100% fatality rate, if you have this disease, you will die from it. Treatments only prolong a life. About a third of the cases of DMD don’t have a family history of it and is most commonly because of a gene mutation or a spontaneous mutation.
There are also learning disabilities associated with DMD, these problems usually occur in three general areas: attention focusing, verbal learning and memory, and emotional interaction. Exercises may be assigned to someone that gets diagnosed. This disease is caused by the interference of the production of muscle proteins that are needed to create and maintain a healthy muscular system. With this form of MD, DMD patients are normally diagnosed before they are 3 and are wheelchair bound by the age 12 and then pass away in their early to late 20’s because of respiratory failure. For example, a normal bicep compared to a person with DMD is a lot bigger, the DMD fails to upkeep the muscle. (See image 1). Unfortunately there is no cure for the disease.
Part II
This disease affects the body physically by deteriorating the muscles because of the lack of a protein called dystrophin. This protein is part of a group of proteins who’s job is to strengthen muscle fibers and protect them from injury. Dystrophin acts as a connecter between cells, connecting to the cells cytoskeleton. The protein is present in muscles required for movement, cardiac/respiratory muscles, and even in the nerve cells in the brain. DMD affects all the muscles in the body including the internal organs like the heart or the lungs. The body doesn’t fight this disease because it is caused by a gene mutation, so the body doesn’t know anything different. If gone untreated, the patient could be in a wheelchair by their teens and die by their 20’s. There is currently no cure for the disease but there are some treatments. Medical devices like braces, standing frames, and wheelchairs may be a way to maintain comfort and function to prolong the life of the patient. On average, a wheelchair is needed by about age 12. There are no cures currently and the only way to prolong the life is by using the mobility and positioning aids stated above. As one may be able to tell, Duchenne Muscular Dystrophy is fast moving and will definitely impair your life if not end it.
Part III
Your emotional health can also be affected by DMD. People with this disease can be facing life in a wheel chair or even be close to death. If you had this disease, you couldn’t play sports, you couldn’t run, you may even be wheelchair bound. And then what, 8 to 15 year later you die. Dealing with this thought process could take a dramatic toll on someone. Not only the physical aspect, but the mental aspect can affect your emotional health. Someone with this disease can expect learning disabilities including attention focusing, verbal learning and memory, and emotional interaction. Some emotions people can expect to see include frustration, anger, self-pity and anxiety. These can all be reduced by some simple things you can do with the affected person. Like encouraging open communication between you and them, encouraging independence, and even encourage them to make their own decisions, they feel like their disease has taken over them, show them that they can still make independent decisions.
Part IV
In terms of social health, DMD doesn’t drag you down that much. Although some people with DMD experience bullying during childhood, they can maintain a solid social life in their later years. Also people with DMD have a lot more self-pity so they are more likely to develop disorders like body dysmorphia. When living with this disease, some of your environment or household may need to change to accommodate it. For example if one lives in a two story house and is wheelchair bound, one’s family may need to invest in a wheelchair lift. This person would need things to help them to take showers, use the bathroom, and anything else that a wheelchair bound person would need.
Part V
Different than the physical/emotional aspects of health, the spiritual side of life is your wellbeing, in accordance with your stress levels, physical activity, and how connected you are from your mind to your body. This differs from person to person because of many factors including environment, intellect, and activity. One person that lives with DMD could have a spirituality that differs than someone with the same disease. Although, one could believe that someone with DMD could be much more spiritual because they know their lifetime is decreased. The Christian World View relates to this disease as follows… Creation, scientists discover DMD and also discover that it is genetic. Fall, scientists see that this disease causes people to die in their early 20’s. Redemption, just like in the Bible, it took a long time for Jesus to come and die for our sins, and so far we haven’t discovered a cure for this disease yet, but with continuous research and sacrifice, we may save many lives. In this case, humans didn’t do anything wrong, the mutation happens without any one persons or societal actions.
Part VI
Meet Conor, a disability activist and a person living with Duchenne Muscular Dystrophy. Right now he is focusing on his living situations for after college. Conor was diagnosed when he was 4 and his mom says that “When Conor was diagnosed at age 4, the Internet was new, and things written about Duchenne (DMD) were very discouraging. Now medicine is advancing and there are clinical trials for new treatments. That’s why we need information on college and independent living” One struggle Conor faces is transitioning into adulthood, and all the challenges that come with it, especially to one living with DMD. For example Conor has many different specialists he has to see, and his mom is normally the one talking to his doctor and discussing treatment plans, medications, and other care management details. But unfortunately someone with DMD will never be able to accomplish these tasks therefore Conor’s mom will continue to be his Primary Caregiver or “Care Coordinator” as she likes to call it.
Conor’s mom says that it can be difficult to find care for Conor. For example she tells about how Conor needed cataract (Clouding of the normally clear lens of the eye)