Down syndrome is a genetic condition. It is not an illness or a disease.
Our bodies are made up of trillions of cells. In each cell there are 46 chromosomes. The DNA in our chromosomes determines how we develop. Down syndrome is caused when there is an extra chromosome. People with Down syndrome have 47 chromosomes in their cells instead of 46. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21.
Although we know how Down syndrome occurs, we do not yet know why it happens. Down syndrome occurs at conception, across all ethnic and social groups and to parents of all ages. It is nobody’s fault. There is no cure and it does not go away.
Down syndrome is the most common chromosome disorder that we know of. One of every 700-900 babies born worldwide will have Down syndrome. Down syndrome is not a new condition.
People with Down syndrome have:
Because no two people are alike, each of these things will vary from one person to another.
A test for Down syndrome can be carried out before a baby is born. Down syndrome is usually recognised at birth and is confirmed by a blood test. It was named after Dr John Langdon Down who first described it.
Most of the young people growing up with Down syndrome today will lead quite ordinary lives in the community. Some people with Down syndrome may not need much help to lead an ordinary life, while others may require a lot of support.
Down syndrome is the most common cause of intellectual disability that we know of. Everyone who has Down syndrome will have some level of intellectual disability. There will be some delay in development and some level of learning difficulty. Because everyone is unique, the level of delay will be different for each person.
When a baby is born, there is no way to tell what level of intellectual disability the child may have. Nor can we predict the way in which this may affect a person’s life. However, we do know that having Down syndrome will not be the most important influence on how that person develops and lives their life. Instead, what happens after birth will be much more important and family, environmental, cultural and social factors will shape their life, just like everyone else.
For many people with Down syndrome, speaking clearly can be difficult. Although a lot of people with Down syndrome speak fluently and clearly, many will need speech and language therapy to achieve this. Very often, people with Down syndrome can understand a lot more than they can express with words. This often means that their abilities are underestimated, which can make them feel frustrated.
Some people with Down syndrome will find it very difficult to develop language skills and speak clearly. This may be made worse by hearing loss.
Down’s Syndrome Association (DSA)
Information, support and training for those affected by Down syndrome.
The Down’s Syndrome Research Foundation UK (DSRF)
Charity for medical research into Down Syndrome.