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Advice on how children with Duchenne Muscular Dystrophy should travel by car

Advice on how children with Duchenne Muscular Dystrophy can travel by car


Among the diseases which cause muscular dystrophy, Duchenne is one which worsens the quickest. What is Duchenne Muscular Dystrophy? It is a genetic disease and is one of the most commonly diagnosed diseases in childhood.

It is a very debilitating disease and life expectancy is, unfortunately quite short (about 30 years). It affects 1 in every 3500 children worldwide. It currently has no cure and the progressive degeneration of muscular fibers means that, at about 12 years old, children with this disease will need to use a wheelchair.

Main symptoms and difficulties of Duchenne Muscular Dystrophy

Children with DMD usually take longer to start walking. They may walk clumsily and fall over repeatedly. Over time, other more obvious symptoms present themselves such as difficulties with getting up off the floor or climbing stairs.

Almost all children affected stop walking from between 7 and 12 years old and these difficulties extend to arm and leg movements and even the trunk.

Advice for children with Duchenne Muscular Dystrophy on how to travel in a car

At Duchenne Parent Project España, a non-profit association created and managed by the parents of children with Duchenne and Becker, they recommend that children travel facing the rear for as long as possible, in order to avoid possible injuries such as whiplash in a collision. This is very important because these children sometimes suffer from poor head control and the head and neck can suffer more than normal in such situations.

In order to maximize the seat's protection, the best child seat's for children with DMD are those which have side securing, both for the trunk and head, and those which have more complete harnesses.

Moreover positioning is vitally important on journeys with these children, as their lower limbs, knees and hips should always be in a suitable position (bent at a 90º angle) and the option of having a footrest, whether incorporated into the child seat or purchased separately, helps considerably.

It is very important that these children are seated in the right position and their bodies are not twisted, which can sometimes happen when they fall asleep on the journey. Therefore, side stops or some kind of extra method of securing the child would significantly improve the conditions under which they travel by car.

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