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5 things people with Down syndrome want you to know

Blog post | 15 Mar 2019

Many years ago, if a child was born with Down syndrome, they weren't expected to live very long or go to a normal school. They weren't expected to have a career or get married.

Thanks to advances in medicine and social attitudes, as well as improved community services, this is no longer the case.

One in every 1,100 babies born in Australia has Down syndrome, also called Trisomy 21, making it the most common cause of intellectual disability. So it's important for everyone to learn more about this genetic condition — and know that people with Down syndrome can live healthy, happy and long lives.

Women of all ages have babies with Down syndrome

While the chance of having a child with Down syndrome increases with a mother's age, 4 in 5 babies with Down syndrome are born to mums under 35. This is because women in this age group have more babies.

So, regardless of age, women in Australia are routinely offered the combined first trimester screening test in early pregnancy. The test calculates the likelihood of their baby having Down syndrome.

People with Down syndrome can expect to live to 60

In the 1940s, a child with Down syndrome had a life expectancy of 12 years. These days, their life expectancy is 60 years and a baby born with Down syndrome could live into their 80s — in line with the general population.

People with Down syndrome don't 'all look the same'. The condition is characterised by certain physical features, but people can have all of them — or none. A person with Down syndrome typically looks more like their close family members than another person with the condition.   

People with Down syndrome are not always happy

While it's nice to think that people with Down syndrome are consistently happy and loving, like most people, they experience a full range of emotions. Yes, every person with Down syndrome has some degree of intellectual disability — but their personalities are as individual as any person in the wider community.

People with Down syndrome can feel angry, sad, embarrassed or excited. In fact, rather than always being happy, people with Down syndrome are at higher risk of mental health conditions such as depression, anxiety and obsessive-compulsive behaviour than the general population.

People with Down syndrome are at risk of developing health problems

Down syndrome can affect a person's immune system, so they are more susceptible to infection and common illnesses — particularly in early childhood.

Even with a healthy diet, people with Down syndrome are more likely to be overweight than the general population. They also have a higher risk of sight and hearing problems, hypothyroidism, problems with their bones and gut defects.

Less than half of babies born with Down syndrome have a congenital heart defect.

Most kids with Down syndrome will live a normal life

Although they will experience learning and developmental delays — and possibly health problems — children born with Down syndrome can grow up to be independent. What happens after the birth matters.

As with any kid, family, environmental, cultural and social factors will determine their success in adulthood. They will need extra help to speak well, get a job, find somewhere to live and have relationships, but achieving these 'normal' things is entirely possible in a supportive, inclusive community.

Celebrate World Down Syndrome Day on March 21

On every day of the lead-up to World Down Syndrome Day, Down Syndrome Australia is sharing people's stories and asking, 'What makes you proud?' Visit the website to see Australians with Down syndrome speak for themselves.

Elijah, a 9-year-old from Brisbane, has a lot to be proud of. Since starting his own YouTube channel in September, Elijah — with his co-host, a puppet named Crumpet — has charmed more than 650 subscribers. When he's not being a YouTube star, Elijah is at school, at Scouts or swimming. Check out this episode of the 'Elijah and Crumpet Show', created especially for World Down Syndrome Day 2019.

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