World Down Syndrome Day: a celebration of life

Key points

• World Down Syndrome Day will be held on March 21 this year
• The average life expectancy for people with Down syndrome is currently 60 years, compared to just 25 years in the 1980s
• People with Down syndrome may experience health issues such as reduced muscle tone which can be improved with age

With World Down Syndrome Day fast approaching on March 21, 2024, learning more about Down syndrome can help us understand the value of inclusion of everyone in our communities. In Australia, around one in 1,100 babies are born with Down syndrome annually, and many people with this condition may be born with or develop related health issues over time.

Each cell in our bodies contains 46 chromosomes but people with Down syndrome have 47 in each cell. The extra chromosome 21 develops at conception and can be tested before and confirmed after birth via a blood test. It is unknown why the extra chromosome is created in the body and what causes it.

The life expectancy for someone with Down syndrome is an average of 60 years, compared to just 25 years old in the 1980s. This is the result of improved health care, medical developments and better quality of life for people with Down syndrome. There is no cure for Down syndrome, but many people living with Down syndrome lead fulfilling lives within their communities.

Down Syndrome NSW CEO Emily Caska wants people to understand that the extraordinary growth in life expectancy for people with Down syndrome is something to celebrate on World Down Syndrome Day.

“We should absolutely be saying congratulations not sorry to people expecting a baby with Down Syndrome! There is nothing to be sorry about. Day after day we connect with people thriving throughout their childhood, their school years and into employment,” said Caska.

It’s not just the CEO of Down Syndrome NSW who understands that people with Down syndrome are valued members of society. Lucy, a mother to a six-month-old daughter with Down syndrome, wants Australians to change their perspective of Down syndrome to be a celebration of life, rather than the genetic results appearing as a devastating outcome of pregnancy. 

“I remember thinking my baby isn’t dying, why is everyone so sorry?” she said.

Lucy seems grateful for her daughter’s presence and enjoys spending time with her in anticipation of her first birthday which is fast approaching.

“She loves playing on her play mat, she is active and strong. She can roll over onto her belly and looks so proud of herself when she does. She gives us endless smiles and sweet giggles and has enriched our lives beyond belief,” said Lucy.

Some of the health concerns that people with Down syndrome may experience can include:

• Congenital heart defects
• Reduced muscle tone
• Neck problems
• Thyroid conditions which can cause weight gain
• Increased likelihood of gum disease
• Vision problems
• Hearing loss

However, as medical advancements continue, the life expectancy and quality of life for people with Down syndrome will hopefully rise as well.

Researchers have also recently discovered a possible link between the common ‘hole in the heart’ condition and a gene found in people with Down syndrome. 

Researchers at the Francis Crick Institute and University College London have identified a gene that causes heart defects called ‘Dyrk1a’ on human chromosome 21 using genetic mapping on human Down syndrome fetal hearts and embryonic hearts from a mouse model of Down syndrome.

Atrioventricular septal defect is the most frequently diagnosed congenital heart condition in children with Down syndrome, with an incidence rate between 30 and 47 percent of congenital heart defects in children with Down syndrome.

Read more about the discovery behind ‘hole in the heart’ impacting half of the population living with Down syndrome here.

How do you plan to spend Down Syndrome Day on March 21?

Let the team at Talking Disability know on social media.

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