About Down syndrome
A brief guide for media professionals

Living with Down syndrome

People who have Down syndrome lead valuable and valued lives when offered the opportunities to do so. More people with Down syndrome are living today than ever before and many are achieving more than ever before, thanks to improved healthcare, better education and greater opportunities. By learning more about the condition we can continue to further improve life opportunities.

Population

Around 750 babies are born with Down syndrome each year in England and Wales – up 25% from around 600 annual births in the early 1990s.
Around 6,000 babies are born with Down syndrome each year in the North America and around 10,000 across Europe.
Approximately 220,000 babies are born with Down syndrome worldwide each year. Over 200,000 of these babies are born in less developed regions of the world.
Over 40,000 people with Down syndrome live in the UK today, around 350,000 in North America and perhaps 400,000 across Europe.
An estimated 3-4 million people are living with Down syndrome worldwide. As global healthcare improves, the population of people with Down syndrome may double over the next 30 years.

The health of people living with Down syndrome

Down syndrome is associated with elevated risks for some health issues. The most prevalent health problems are mild-moderate hearing loss (80%), vision problems (60%), heart defects (44%) and dementia (9% up to the age of 45 years, 18% of those aged 50-54, and 35% of those aged 55-59).
Except for dementia in later adult life, most health and medical issues can be successfully treated and managed given knowledgeable healthcare.
Successful management and treatment of health conditions has raised average life expectancy dramatically for people with Down syndrome from around 12 years in 1950 to around 60 years today.

The learning abilities of people living with Down syndrome

All people with Down syndrome experience some degree of learning difficulties.
For some, these difficulties are relatively mild. Most experience moderate learning difficulties, but can still learn to read, write and count to useful levels of competence.
Some people with Down syndrome experience more complex and severe difficulties, sometimes due to additional conditions such as autism.
Many people with Down syndrome are capable of productive employment.
There is a particular pattern of learning difficulties experienced by those with Down syndrome including strengths in visual memory and learning and relative difficulties with processing and learning verbal information.
Improved understanding of this profile during the past 20 years has informed more effective therapies, early intervention and education.

A genetic condition

Down syndrome is a genetic condition that is associated in most cases by presence of an additional copy of chromosome 21, present in every cell from the point of conception.
The extra copy of chromosome 21 disturbs some biological processes during early development and throughout life, leading to many of the characteristics associated with the condition.
There is notable variability among people with Down syndrome – not all characteristics are inevitable consequences of the extra chromosome for all individuals.

Improving the quality of life experienced by people with Down syndrome

The quality of life experienced by many people with Down syndrome has improved markedly over the past 40 years.
The biology has remained the same, but the social opportunities, healthcare and education offered to people with Down syndrome have improved.
As a result, it has become clear that the condition itself is not as disabling as once thought.
There is much more to do before people with Down syndrome everywhere receive high quality healthcare and education, broad social inclusion and regular employment, but in general progress in recent decades has been remarkable.

Global inequalities

Life has improved most dramatically for people living in more wealthy countries.
In some industrialised countries, including some members of the European Union or close neighbours, the parents of babies who have Down syndrome are urged to abandon their children to state-run orphanages and institutions offering poor standards of care.
In many countries, people who have Down syndrome cannot obtain equal access to healthcare, appropriate education or employment opportunities.
Children with disabilities, including many who have Down syndrome, who live in developing countries are disproportionately disadvantaged. Approximately one third of the 77 million children still out of school around the world are disabled children and that fewer than 10% of disabled children in Africa attend school.

Terminology

Down syndrome (rather than Down's syndrome) is now the accepted form throughout most English speaking countries worldwide.
People with Down syndrome are people first. Please refer to "children who have Down syndrome" or "a person with Down syndrome" and not to "Down's children" or even worse "a Downs". Labels really do affect how we think, feel and behave towards people with disabilities.
Not sufferers. Please do not describe anyone as "suffering" from Down syndrome. This is offensive to those who live with Down syndrome. Most individuals living with Down syndrome are happy, healthy and enjoying their lives. Having Down syndrome imposes some limits on development and life opportunities, which is a cause of sadness for individuals with Down syndrome and their loved ones when they reflect on it. However, most of the time life goes on with the daily joys and stresses, just like everyone else.

Contacts

press@downsed.org

Down Syndrome Education International

Down Syndrome Education International works to improve education for young people with Down syndrome through scientific research and evidence-based information and support services. The charity works with families, teachers and therapists, researchers and support organisations in over 170 countries. Down Syndrome Education International’s work helps over 100,000 people with Down syndrome to achieve more every year.

Web site: http://www.downsed.org/

In the UK, most children who have Down syndrome are fully included in the same primary schools as their typically developing brothers and sisters and friends

Approximately 220,000 babies are born with Down syndrome worldwide each year

Successful management and treatment of health conditions has raised average life expectancy dramatically for people with Down syndrome from around 12 years in 1950 to around 60 years today

Improved understanding of the specific learning difficulties experienced by people who have Down syndrome during the past 20 years has informed more effective therapies, early intervention and education

Children with disabilities, including many who have Down syndrome, who live in developing countries are disproportionately disadvantaged. Approximately one third of the 77 million children still out of school around the world are disabled children

There is much more to do before people with Down syndrome everywhere receive high quality healthcare and education, broad social inclusion and regular employment, but in general progress in recent decades has been remarkable

About Down syndrome A brief guide for media professionals