Health Care and Survival Rate

There are distinct global variations in the survival rate of Duchenne Children. Unlike Iran, where the the majority of Duchenne children will die in their teens or early 20’s, the average life expectancy in Europe and America/Canada is 28 years, with some Duchenne adults reaching 30-40 years of age. Survival to this age usually requires access to specialised support to maintain good heart and lung function, avoid falls, fractures and infections and receive excellent daily care. The progression of the disease can be slowed with access to early diagnosis, early initiation of physical and pharmacological treatment, good nutrition and access to technology to support cardiac and respiratory function. The parents, siblings and carers of Duchenne children also need support and education themselves in order to maintain their own physical and psychological health and be better equipt to care for affected children.When children with Duchenne are supported by good physical, psychological and social health care they are able to live longer, have improved quality of life and can therefore lead much happier and productive lives.

Contrast this with Iran where many children deteriorate rapidly in the early stages of the condition because of the lack of access to physiotherapy and occupational therapy to maintain mobility. These children progress more quickly  to immobility and dependence, experience increased rates of chest and urinary tract infections, emaciation, limb contractures, fractures and the spinal distortions that lead to earlier cardiac and respiratory failure. When their families are no longer able to care for them, Duchenne children are often moved to inadequately resourced institutions where they may die alone and unattended at night, usually as a result of respiratory dysfunction and subsequent respiratory or cardiac failure.