This month, My Family, Our Needs turns it spotlight on Down’s syndrome and explores the condition in more detail.
What is Down’s syndrome?
Down’s syndrome is caused by the presence of an extra chromosome in the body’s cells. In the majority of cases, Down’s syndrome is not an inherited condition. It usually occurs because of a chance happening at the time of conception.
The human body is made up of cells. Each cell is like a tiny factory, which makes the materials needed for growth and maintenance of the body. All cells contain a nucleus in which genes are stored. Genes are grouped along rod-like structures called chromosomes.
Usually, the nucleus of each cell contains 23 pairs of chromosomes – 23 we inherit from our mum and 23 we inherit from our dad. In people with Down’s syndrome, the cells contain 47 chromosomes, with an extra copy of chromosome 21. This additional genetic material results in Down’s syndrome. As yet, it is not known what causes the presence of an extra chromosome 21. There is a definite link with advanced maternal age for reasons yet unknown. However, many babies with Down’s syndrome are born to women under the age of 35.
Nothing done before or during pregnancy can cause Down’s syndrome. It occurs in all races, social classes and in all countries throughout the world. Anyone can have a baby with Down’s syndrome.
There are approximately 40,000 people in the UK with the condition.
How is Down’s syndrome diagnosed?
In some cases, babies with Down’s syndrome are identified before birth, as a result of the mother having a diagnostic test. In most cases, it is discovered that a baby has Down’s syndrome soon after birth. The initial diagnosis is usually made because a doctor notices certain physical characteristics that are more common in people with Down’s syndrome. The diagnosis is confirmed by analysis of a blood sample from the baby.
How does Down’s syndrome affect development?
Children with Down’s syndrome generally take longer to reach developmental milestones and they will need some additional support to learn new skills, as well as extra help when they go to school.
Just as with all children, there is a great deal of individual variation in the age at which different skills develop, and the way the syndrome affects a person’s development, learning and health varies widely.
What are people with Down’s syndrome like?
People with Down’s syndrome are all unique individuals with their own personalities, family backgrounds and preferences that make them who they are. Like most people, they learn at school, have interests, hobbies and talents, and have friends and relationships. Each person will have a unique personality.
The effect that the extra genetic material has on each person’s health and development varies a lot. Everyone will have some additional needs, but the way the syndrome affects an individual will be different from person to person. There are certain physical characteristics that are more common in people with Down’s syndrome. However, they will look more like members of their own family than other people with the condition.
Everyone with Down’s syndrome will have some degree of learning disability. Having a learning disability means that it takes longer for a person to process information and to learn new skills and tasks. A learning disability will last throughout a person’s life. People with a learning disability may not learn things as quickly as other people and they may need more help and support to learn. This does not mean that they cannot learn new information and skills.
Although each person is different, people with Down’s syndrome may share certain ways of learning. They can have strong visual learning skills; they may be good at learning by watching and doing and find it harder to learn by listening. Using hands on practical experience, pictures, photos and films will help a person with Down’s syndrome learn new information and skills.
What are the more common health conditions in people with Down’s syndrome?
Certain health conditions are more common in people with Down’s syndrome although not every person with Down’s syndrome will experience these. All of the health conditions more common in people with Down’s syndrome are seen in the general population and many people will lead a healthy lifestyle with the right support and health checks.
About 50% of babies born with Down’s syndrome will have a heart problem, it may be a relatively minor condition that needs monitoring, or it may be a more serious complication that means the child will need surgery. Screening from an early stage and timely interventions now ensure that, for most people, the outlook is good.
A significant number of people with Down’s syndrome will have a hearing impairment. This can be temporary or permanent, and some people may wear a hearing aid. Everyone with Down’s syndrome will have poor visual acuity. This means they will see the world differently, with less fine details, even when wearing glasses. It is therefore important that people receive regular hearing and eye checks.
Some other common health issues include thyroid function and gastrointestinal conditions.
Advances in knowledge and increased access to medical care mean that people with Down’s syndrome are now living much longer than in the past. The average life expectancy is between 50 and 60 years with a small number of people living into their 70s and beyond.
What is life like for people with Down’s syndrome?
The quality of life, life expectancy and role in the community for people with Down’s syndrome have gradually been transformed as education and support have improved. There are now many more opportunities for people with Down’s syndrome to lead the lives they want to.
You can find information about supporting people with Down’s syndrome along with children and adult’s life stories at the DSA’s website
What is the correct terminology regarding people with Down’s syndrome?
Down’s syndrome is not a disease and therefore people with Down’s syndrome do not ‘suffer’, nor are they ‘victims’ of their condition. Down’s syndrome is only a part of the person; they should not be referred to as a ‘Down’s’ or a ‘Down’s person’. People with Down’s syndrome are all unique individuals and should be acknowledged as a person first and foremost. It is important to think of the person first, e.g. John is 29 and has Down’s syndrome.
About the Down’s Syndrome Association
The Down’s syndrome Association (DSA) is the only charity in England, Wales and Northern Ireland which provides information and support on all aspects of living with Down’s syndrome. They work to champion the rights of people with Down’s syndrome, by campaigning for change and challenging discrimination.
There are separate sections of the website for parents/carers, people with Down’s syndrome and professionals. The DSA provide training to benefit people with Down’s syndrome throughout their lives. Tell it Right, Start It Right for the time of diagnosis, education and development training to promote learning opportunities and training for carers who support people who are ageing. The DSA also offers online training including online support for parents and teachers as part of their school support service.
With thanks to the Down’s Syndrome Association for their guidance.
The website has separate sections for parents/carers, people with Down’s syndrome and professionals. The DSA provide training to benefit people with Down’s syndrome throughout their lives. Tell it Right, Start It Right is a campaign for the time of diagnosis, education and development training to promote learning opportunities and training for carers who support people who are ageing. The DSA also offers online training including online support for parents and teachers as part of their school support service.
0333 1212 300 – open 10am to 4pm Monday to Friday.
Advice and information, plus where people can find the right support for them