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The four ages of Down syndrome

Glasson, E.J., Hussain, R., Bower, C. and Bittles, A.H. (2004) The four ages of Down syndrome. In: Genetics and Population Health, 8 - 10 August 2004, Fremantle, Western Australia


Down syndrome affects approximately 1 per 750-1,000 live births and is the most common known genetic form of intellectual disability. The typical picture evoked of a person with Down syndrome (DS) is usually of a young, happy, contented child, who is a much-loved family member. While detailed information on the clinical effects of DS is readily available, it is largely concentrated on events in the first decade of life. What often remains unstated is that life expectancy in individuals with DS has increased from approximately 15 to 60 years of age during the last fifty years. A change of this nature requires a major re-appraisal in our thinking, with greater focus on the medical and social needs of people with DS and their families across their entire lifespan. It has been assumed that, with improved medical technologies, younger Down syndrome cohorts will experience healthier lives than in previous generations. However, the health issues associated with the disorder are largely genetically encoded and their onset is usually age-associated. Four life stages of Down syndrome can be defined prenatal, neonatal/early childhood, adulthood, and senescence all of which exhibit specific comorbidities. To maintain a high quality of life for people with DS, these conditions need to be recognised and managed appropriately.

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