IMPROVING QUALITY OF LIFE
INFORMING YOUR SON
HYDROTHERAPY
WHAT IS DMD
The most common muscular dystrophy in children is Duchenne muscular dystrophy. It's an illness that causes muscles to weaken over time, eventually affecting the entire body. It is not contagious to have Duchenne muscular dystrophy. Duchenne affects around one out of every 3,500 boys, and 20,000 kids are born with it each year throughout the world. Duchenne affects predominantly boys and affects people of all colours and cultures. Even brothers with the same mutation may experience symptoms in quite different ways. The symptoms of Duchenne are progressive, ranging from mild to severe.
ABOUT US
We think from the perspective of a mother of specially-abled. We should come together and help each other to bring up a child. There are many questions and confusions in the mother's mind while bringing up a specially-abled child. We took the initiative to form this group for mothers of DMD. We are here to help you and guide you through. Duchenne Muscular Dystrophy (DMD) is the most common form of muscular dystrophy. It is a rare genetic condition that weakens a child's muscle and spreads loss of muscle mass throughout the body.
- Do not talk about his future if he does not ask about it. If he does ask, do not avoid the subject and always be honest. But never shut the door on new possibilities by saying, for example: “There are many doctors experimenting and searching for a cure, who knows what will be possible in a few years?”
- To spread awareness about DMD and ways to take care of DMD children
- Do not talk about his future if he does not ask about it. If he does ask, do not avoid the subject and always be honest. But never shut the door on new possibilities by saying, for example: “There are many doctors experimenting and searching for a cure, who knows what will be possible in a few years?”
OUR OBJECTIVES
We all DMD moms are sailing in the same boat and have to face a lot of challenges while taking care of our children. Being a DMD mom I often hold my son's hands at least for 10 to 15 minutes daily sitting in front of him smiling, talking and sharing my feelings. Slowly it became a habit and he started feeling cared, connected and relaxed. He shares almost everything with me and his elder brother. Normally these children as they grow up start keeping their pains to themselves but holding hands with a smile can do wonders. This effects their mental health of children as well.
- To maintain a child's mental and physical health and lessen the side effects of DMD to provide a better quality of life.
- Have online monthly meetings with mothers. These meetings provide a platform for mothers to share their experiences, clarify doubts and learn from each other.
- Share about availability and usage of durable medical equipment.
- To explore, encourage and appreciate talent in the children.
INFORMING YOUR SON
When the boys get older (from age 7), they will become less egocentric and are more capable of thinking about their future. They can now think about their later lives. It is not until this turning point that they begin to accept their disease and its disabilities. As the boys get older, occasional short talks can help them to talk about the different aspects of their disease. The following guidelines may help you talk about Duchenne with your son:
- Always be honest, but do not talk too much: provide the boy merely with the information he asks for. Keep in mind that children do not ask more than they are capable of coping with.
- Reassure him. You can do this by telling him, for example: “You will get anything you need, and we know smart doctors who will do everything they can to help us”.
- Be sure that the boy understands that his disease is not his fault: he is not to blame!
- Anger, grief and other emotions can emerge during such talks (see box 21). This is completely normal, so do not try to avoid it. Instead show understanding and be a coach of the boy’s emotions.
