Duchenne muscular dystrophy or DMD is one of the nine types of muscular dystrophy. DMD is characterized by progressive muscle degeneration and weakness. DMD effects nearly 1 in every 3,500 boys, and is primarily detected during childhood.
Understanding the disease is the first step in coping with it.
As a parent, it can be challenging to deal with the idea that your child will experience progressive loss of strength that could develop into serious heart and lung issues. As your child grows, he may experience sadness, anxiety or frustration as a result of fear and uncertainty to a stressful situation.
This disease doesn’t have to determine you or your child’s emotional quality of life. Below are some ideas to help you and your child cope with DMD:
Express your emotions
You and your child should be able to express emotions in a healthy manner. If the help of a professional is needed don’t hesitate to ask for help.
Open the conversation for emotional issues. Be supportive of each other’s feelings and concerns.
Over-protecting your child might be a natural instinct as a parent; you never want your child to go through anything that will hurt them, but it is important to encourage your child to be independent. Encouragement will give them power over this challenging situation and the strength to cope.
Let them make decisions. As they grow older, guide them through a decision-making process, encourage them, and acknowledge what they want or need.
We are social by nature. Encourage your child to take part in activities that will make them happy and to spend time with friends.
The same goes for you. Everybody needs a support system and friends to laugh with.
Emotional stability is essential to deal with a disease such as DMD, for you and your child. A stable support system, a positive attitude and healthy communication can make a difference.
Northwest Florida Clinical Research Group is currently conducting research studies for those who suffer from DMD. Participants are seen by board-certified physicians and other medical professionals at no cost and compensation is provided for time and travel. Education about how to deal with DMD may be provided, and many participants are expose to treatment options that they may not have considered or had access to previously.