World Down Syndrome Day takes place on 21 March, offering the opportunity to celebrate the lives and contributions of people with Down’s syndrome. This year, organisers are calling on governments worldwide to improve support systems
A round one in 1000 babies are born with Down’s syndrome (DS) each year in the UK, making it one of the most common chromosomal conditions. Sometimes referred to as Trisomy 21, it’s a naturally occurring genetic difference, which occurs when a person has an extra copy of chromosome 21. That’s why World Down Syndrome Day takes place every year on 21 March.
Down’s syndrome affects everyone differently, but many people with DS are impacted by a range of health issues including delayed language and speech development, reduced motor skills, heart conditions and hearing loss.
NO LIMITS
However, DS is more than just a collection of symptoms, and people with DS, their families and the professionals who work with them are keen to show that a life with DS doesn’t need to be limited. More people than ever with DS are attending mainstream schools, securing employment, and living independently or with support.
What’s more, research carried out in 2011 – which involved surveying people with DS who were over 12 years of age to learn more about their self-perception – found that nearly 99% of people surveyed said they were happy with their lives. In the 1960s, the average life expectancy for a person with Down’s syndrome was only 15 years. Now many people are living into their sixties and beyond, thanks to advances in medical care, education and social attitudes (as well as, according to the Global Down Syndrome Foundation, the end of the inhumane practice of institutionalising people with Down’s syndrome).
However, barriers remain. Many families report difficulties accessing healthcare, education, and social services. A 2023 report in The Lancet found that people with DS face “persistent disparities in health outcomes stemming from insufficient awareness and training about Down’s syndrome among physicians, professionals and families…all exacerbated by wider structural factors such as social discrimination and inadequate provision of services.”
A HUMAN RIGHT
Officially observed globally by the United Nations since 2012, this year’s World Down Syndrome Day theme Shine a light is #ImproveOurSupportSystems. People are being asked to call on their governments to implement support systems that meet the needs of disabled people and their families, since “support is a key human right that helps make other rights possible.”
By improving these support systems – like governance, social protection, in-person support, access to transport and accessible, affordable housing – governments across the world can help uphold the human rights of people with DS so they can take part in politics, be included in education, receive good healthcare, and enjoy access to culture, leisure and sport.
That’s why World Down Syndrome Day provides an important call to action, encouraging people with DS, their families and wider society to improve accessibility and support for people with DS, so they can live long, fulfilling and happy lives.
FIND OUT MORE
Down’s Syndrome Association: downs-syndrome.org.uk / 0333 121 2300
Down Syndrome UK: downsyndromeuk.co.uk
World Down Syndrome Day: worlddownsyndromeday.org