Muscular dystrophy (MD) is a genetic disorder characterized by progressive muscle weakness and degeneration. MD is a progressive disorder which means that it worsens over time. It affects skeletal muscles that are responsible for controlling body movement and eventually affects other organs. There are more than 30 different kinds of muscular dystrophy; some appear in early childhood while others are detected later in life. Other differences between the disorders include the primarily affected muscles and the degree and progression of weakness.
Common Types of Muscular Dystrophy
Duchenne Muscular Dystrophy (DMD): It primarily affects males more than females. It is caused by a lack of dystrophin which is a protein responsible for maintaining muscle integrity. DMD has an early onset which is between 3-5 years and has a rapid progression.
Becker Muscular Dystrophy: It is similar to DMD since the cause includes faulty or inadequate dystrophin. It is less severe than DMD and develops later in childhood.
Facioscapulohumeral Muscular Dystrophy: develops in either childhood or adulthood with low severity. It progressively weakens the muscles of the face, shoulders, chest, arms, and legs. It has a slow progression with symptoms varying from mild to disabling.
Myotonic Muscular Dystrophy: It affects adults and is characterized by prolonged muscle spasms, cataracts, cardiac anomalies, and disturbances in the endocrine. People affected by it have drooping eyelids, long and thin faces, and a swan-like neck.
Treatments of muscular dystrophy are focused on helping the affected patient have a better quality of life since there is no cure for the disorder as of the moment. Considering how varied the types of Muscular Dystrophy are, patients affected by it are often misunderstood, and sometimes, they are even mistreated. Knowing the basics about muscular dystrophy helps us better understand the struggles that the patient goes through in life. What people with muscular dystrophy want you to know is that each type of muscular dystrophy affects people differently.
What People with Muscular Dystrophy Want You to Know
Here is a list of what people with muscular dystrophy want you to know:
1. Muscular Dystrophy has a huge effect on a person’s physical activities.
Often, people affected with muscular dystrophy are unable to walk due to the worsening of muscle weakness in the legs. You must understand that it is not just their legs that are affected, but their entire body as well. This only proves how much care and support people with muscular dystrophy need in their everyday lives.
Although some types of muscular dystrophy are not as worse as others, you should not mistake slow movements or inability to complete a task for laziness. Remember that the body is composed of muscles that help us move, and when these skeletal muscles are weakened, imagine how difficult it would be for you to carry out tasks. For some patients with the disorder, the severity may be low, and they may appear healthy on the outside, but there is still muscle weakness. Some patients will have difficulty lifting objects above the waist, while others will notably move slower than usual and can easily get tired.
Another thing people with muscular dystrophy want you to know is that working out or lifting weights is not going to help them be strong again. You must understand that this is a progressive disorder, and it worsens as time passes.
2. Muscular Dystrophy does not only affect a person physically; it also affects them emotionally.
Following the physical disabilities that this disorder brings, inability to do simple tasks by yourself can be frustrating and depressing. Constantly needing someone’s assistance is emotionally draining, and that’s why empathy and a deeper understanding is needed when dealing with people with muscular dystrophy.
How would you feel if you suddenly couldn't do the things that you used to do every day? If one day you wake up and realized that you could not walk anymore? It would certainly take a toll on you emotionally, and for this reason, it is not enough to just provide physical assistance to people affected by it, and emotional support is as important.
3. Muscular Dystrophy does not only affect an individual; it also affects the family.
Considering how much physical and emotional support is required in caring for people with muscular dystrophy, it would certainly have a huge effect on the family as a whole. What people with muscular dystrophy want you to knowis that they are not the only ones suffering from this condition, and this disorder also has an impact on their family members, and they too need emotional support and understanding. Support groups are a great avenue for family members to share their feelings and experiences in handling muscular dystrophy.
4. Muscular Dystrophy affects patients socially.
Some muscular dystrophy affects the facial muscles, which cause changes in the person’s physical appearance. Some people would have the tendency to stare, but what people with muscular dystrophy want you to know is that it is better to ask them about it if you are curious rather than to just stare. Some people are often scared to go near people who have muscular dystrophy but it is in no way contagious.
5. Muscular Dystrophy does not affect any cognitive function.
People affected by Muscular Dystrophy may have more physical limitations, but that does not mean that they cannot hear or understand what you are saying. Muscular dystrophy affects the muscles and not the brain, so don’t treat patients like they know less.
6. Dealing with doctors is not easy for people with Muscular Dystrophy.
Doctors often turn to their textbooks when dealing with a patient. What people with muscular dystrophy want you to know is that each case of muscular dystrophy is different. It is important to actually listen to what the patients and their families say and base the course of treatment on their actual symptoms rather than turning to a textbook for reference. The best resource for understanding muscular dystrophy is the patient and the caregiver, which is often a family member. Pay attention to everything they say, because they are the ones who understand their needs and not a textbook.
7. People who have Muscular Dystrophy deserve all the help and support that they can get.
Currently, there is not enough research and awareness being done about Muscular Dystrophy. As we now know, this disorder has a huge impact physically, emotionally, and socially on people affected by it and their family. Knowing how much treatment a patient has to undergo to deal with the symptoms proves how economically draining it is. We should all strive to promote awareness and give all the support we can provide to these amazing people who are fighting hard to live the life they deserve.
Muscular dystrophy may be a tough enemy to beat, but keep in mind that this does not define who you are as a person. You may not be the person you used to be or the person you imagined, but you will always be the person that you are inside. Do not let muscular dystrophy drag you down. You are never alone in this battle, and there will always be individuals who are willing to give their support in your fight against it.