How much do you know about Down syndrome? Maybe you have a close relative or family friend with Down syndrome. Maybe you are thinking of your neighbour down the road or the actor in your favourite TV show. Whatever your knowledge of Down syndrome is, we thought we’d break the history down a little and bust some common (and sometimes harmful) myths…
What is Down syndrome?
Down syndrome is a chromosomal disorder that affects roughly one in every 1,000 babies born in the UK. People with Down syndrome have a learning disability but the severity of this can vary a lot depending on the individual. Like all people, it is never a one-size-fits-all situation and they will have a range of abilities, and need varying levels of support. For example, some people with Down syndrome may be able to communicate through speech. Others may use Makaton, sign language, PECS (Picture Exchange Communication System) or similar tools. Regardless of how individuals communicate, their voice is important.
Why is it called Down syndrome?
Down syndrome was named after the British physician John Langdon Down who first described the syndrome in the mid-1800s. Dr Langdon Down spent his life trying to better understand people with Down syndrome. In 1868, he built Normansfield Hospital to care for people with learning disabilities. Unlike other medical professionals at the time, he knew they were deserving of support and education.
There is a museum dedicated to Dr John Langdon Down and his work called the Langdon Down Museum which is based in Teddington, Middlesex. The building is now owned and managed by the Down’s Syndrome Association and many consider it to be the ‘spiritual home’ of Down syndrome.
Is it Down’s syndrome or Down syndrome?
Both are correct. It is a preference, depending on the individual or organisation. Mencap explain on their website that they ‘prefer to use the term ‘Down syndrome’ rather than ‘Down’s syndrome’ because Down syndrome is named after the English physician John Langdon Down, who characterised the condition, but did not have it.’ Whereas the Down’s Syndrome Association, feel the both terms can be used and ‘the most important thing is the use of person first terminology (e.g. ‘person who has Down’s syndrome’, not ‘Down’s syndrome person’).’
Myth 1: There is one type of Down syndrome
False. While Trisomy 21 is the most common and well-known, there are three types of Down syndrome: Trisomy, Mosaic and Translocation. Trisomy is where there is a third copy of chromosome 21 and this makes up for 95% of people diagnosed with Down syndrome. Translocation is when a chromosome 21 becomes attached to another chromosome and this accounts for 2-3% of people diagnosed with Down syndrome. Finally, there is Mosaic (sometimes considered the rarest), accounting for roughly 2-3%, and occurs when some cells contain the usual 46 chromosomes and others contain an extra 47.
Myth 2: Down syndrome runs in families
False. In nearly all cases, Down syndrome doesn’t run in families. Only 1% of people with Down syndrome were passed a gene by their parent and this is only present in people with Translocation Down syndrome.
Myth 3: People with Down syndrome are always happy
False. While some people with Down syndrome may be bubbly and outgoing, like all people, their personalities vary, as do their emotions. They have their likes and dislikes, their goals and most importantly, their own unique experience of life.
Myth 4: People with Down syndrome look the same
False. While there are some common physical traits, not everyone with Down syndrome has every trait. Often individuals have more of a resemblance to their families than other people with Down syndrome. Like myth 3 (see above), this idea reduces the rich and varied experience of people with Down syndrome. Putting people into narrow boxes can limit opportunities, impact how people are treated and silence those with lived experience.
A final (but important) note
While many people focus on the limitations associated with learning disabilities, the reality is, whether Down syndrome or another disability, many people live full lives. Like anyone else, they can live independently, make friends, have jobs and fall in love. Some are athletes, performers and activists. And all, with no exception, are important and valued members of the community.
Resources for families in East Sussex
Down’s Syndrome Educational Trust
