Duchenne Muscular Dystrophy

What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy (DMD) is the most commonly inherited neuromuscular condition affecting muscles of all types (skeletal, cardiac and smooth). Sometimes there may be involvement of the brain and nerves, which can cause either mild or severe learning difficulties. The muscle weakness is progressive affecting the larger muscles, which work to provide movement and to maintain an upright posture at first. Smaller muscles used for fine motor activities do not weaken as early as the larger muscles. The heart is a muscle too, and muscles are also necessary for breathing. It is the weakening of these muscles, which leads to a shortened life span.

How Common is the Condition?

The incidence is thought to be one in 3500 live-born boys around the world.

How Does a Child Get DMD?

The condition can be inherited from a carrier mother or it can arise as result of a new mutation when the 'change' in the gene has occurred during the development of that child.

At What Stage Does DMD Develop?

Because DMD is a genetic disorder it is present from conception however the clinical signs of the condition don't usually become evident until between two and five years of age, when early signs of muscle weakness become evident. These signs can include difficulty running and climbing, frequent falls, toe walking and sometimes overdeveloped muscles (particularly calf muscles). A delay in speech and language development in some and behavior difficulties in others may be present before any signs of muscle weakness. In the natural course of the condition children lose the ability to walk at around ten years of age and life expectancy is reduced.

What Treatment is Available to Help Kids with DMD?

There is at this time no cure for DMD but there are many recommended therapies, which can delay the onset of secondary problems. In recent years children are living longer, healthier lives as a result of great advances in their care and medical management.

How Does MontroseAccess Assist?

Physiotherapy is a very important part of children's treatment from the beginning and it can play a very important part in reducing the known secondary complications. Regular stretching, splinting and 'low load' exercise in the form of swimming are all recommended.

Speech Therapy can be invaluable in preparing the child for all forms of verbal learning. The verbal aspects of thinking and learning are more affected for boys with DMD. Fortunately it is not progressive with many children needing some early assistance to overcome what is thought to be a delay of approximately two years in this area of learning.

If there are behavioral issues the team social worker will offer strategies to overcome these difficulties. Occupational Therapists can also assist in many areas in the early stages including all fine motor tasks and general development of skills needed for easy transition to school. It is very important to develop recreational activities and interests, which can be developed and enjoyed throughout life. The recreation department at MontroseAccess has a wealth of ideas.

As the children become older and their muscles weaken, they become more dependent on their parents. MontroseAccess's in-home and out-of-home respite services provide parents with a necessary break from the constant care the children require. The out-of home respite services also provides the children with an opportunity to socialise with other children who are in similar situations.

What is Happening to Find a Cure?

There are many promising avenues of research being conducted on many fronts and in very many laboratories around the world.