I often get asked why I use T21 rather than Down’s Syndrome. To be honest, I use the terms interchangeably. I prefer T21, but I still use Down’s Syndrome quite often!
Why is it called Down’s Syndrome?
The first person to formally identify a group of patients with similar characteristics was Dr John Langdon Down, back in 1866. Before this, the term ‘mongolian’ was used.
In the 1960s, a campaign was launched, supported by Dr Langdon Down’s grandson, to suggest the name be changed to Down’s Syndrome. The WHO adopted the recommendation in 1965, and Down’s Syndrome because the widely accepted terminology.
Is it Down’s or Down Syndrome?
The two names are interchangeable. In the USA, the term ‘Down’ is used, and in the UK, ‘Down’s’. It doesn’t really make a difference which is used.
So what is T21?
Developments in genetic testing in the 1950s led to the discovery that T21 was caused by an extra copy of the 21st chromosome. This means that people with Down’s Syndrome have three copies of the 21st chromosome, and 47 chromosomes in total.
The medical term for this is Trisomy (tri·so·my \ ˈtrī-ˌsō-mē) 21, or T21 for short.
It’s exactly the same at Down’s Syndrome, just a different term.
Why say T21 instead of Down’s Syndrome?
There are a few reasons why I prefer T21. The reasons are purely language based.
First, it’s very easy for people to say ‘Down’s baby’ or ‘Down’s person’, or they’re ‘Down’s’.
There will be a whole other blog post on why this isn’t great, but essentially, RoRo is sooo much more than a chromosomal condition. Rosie is not just Down’s Syndrome, she’s RoRo, who happens to have Down’s Syndrome.
It’s much easier for people to say ‘Down’s baby’ than ‘T21 baby’.
Secondly, there’s nothing down about RoRo. Honestly, she gets the grumps like any other 17 month old, she’s not always happy and there’s nothing down about her. Although it’s called ‘Down’s’ after the person, it still creates connotations!
So my personal preference is to say RoRo has Trisomy 21. Or T21 for short.
RoRo is RoRo, who has T21 but is so much more than a diagnosis. I hope that by changing the language used, we can all move one step closer to changing assumptions and stereotypes.