World Down Syndrome Day: 3 Common Misconceptions About Down Syndrome, Debunked
The 21st of the 3rd month of the year is a clever choice for a date of acknowledgment and raising awareness about Down syndrome, as it represents the cause of Down syndrome – the triplication of the 21s chromosome. We at FindMeCure enjoy easter eggs like this one, so we picked a number of myths to bust accordingly.
But before we get to that, why do we choose to participate in World Down Syndrome Day in the first place? If you’ve been following the blog you probably already know that we love a good opportunity to raise awareness and advocate for more research and acceptance. We do it because we acknowledge the importance of having difficult conversations about health on a larger scale and engage stakeholders in a broad dialogue about the many opportunities for change.
We believe that by addressing the most common misconceptions we break the stigma around certain health conditions and make space for greater understanding and a shift in perception. People with Down syndrome can live longer, happier lives if more research into health issues accompanying the condition is done and more negative stereotypes are deconstructed.
As a society, we have come a long way from the time when children with Down syndrome were abandoned by their families and institutionalized but we should keep on fighting the good fight by initiating conversations, correcting misconceptions and fostering more empathy and kindness.
Misconception 1: People with Down syndrome suffer from multiple illnesses and have a short life span
The average life expectancy of a person with Down syndrome in the United States is 60 years – a prognosis similar to that in most developed countries where people with Down syndrome receive quality healthcare. Some people with Down syndrome even get to enjoy their 70s and 80s thanks to adequate care and a high quality of life.
While yes, it’s true that Down syndrome is associated with a number of health complications, some of which more dangerous than others, adequate healthcare can go a long way. Almost half of the babies born with Down syndrome have some type of heart defect, so doctors screen every baby and take all necessary measures. Alzheimer’s is the second most prevalent disease among people living with Down syndrome, so research efforts are directed at finding more about this connection and what can be done about it, with clinical trials testing treatments for dementia in adults with Down syndrome.
Another health condition people with Down syndrome should be regularly screened for is hypothyroidism. Since thyroid issues are easily diagnosed and treated, complications related to hypothyroidism such as obesity can be prevented.
As for leukemia, by far the scariest of all the diseases listed here, the risk of developing it, although higher for people with Down syndrome compared to the general population, is still not overwhelming – about 1% of people with Down syndrome compared to 0.1%. They respond to treatment just as well as the general population, though, and like always – early diagnosis is key.
Of all the other less scary issues a person with Down syndrome can be at a higher risk of developing, hearing loss is the most concerning, with up to 80% of children with Down syndrome experiencing it. Regular check-ups, as well as adequate maintenance (the anatomy of the ear is slightly different, so ear wax can accumulate), are recommended.
It’s important to note that people with Down syndrome do not experience all of the possible health complications at one and some of them go their whole lives experiencing none of them. However, even if some of these diseases are present, they can be treated and with proper care, people with Down syndrome can have long fulfilling lives and enjoy good enough health. The more research makes progress, the more this is true.
Misconception 2: People with Down syndrome can’t have normal lives
Depending on the way we define ‘normal’ as the average of what people usually choose to do with their lives, people with Down syndrome can have ‘normal’ lives or they can be quite extraordinary.
It’s true that Down syndrome is linked to some forms of cognitive disability but usually, we’re talking about minor to moderate developmental issues. For example, a child with Down syndrome might need a bit more time and patience from teachers and caregivers in order to learn how to read and write. This does not mean that such children have no use for formal education – on the contrary, some research suggests that high expectations and formal evaluation can benefit children with Down syndrome and they’re in no way ‘a lost cause’ when it comes to learning.
Likewise, playing sports and being physically active is not off limits either. Graduating high school, going to college and being an active member of the community are all achievable within the right conditions. People with Down Syndrome go into many different fields of work, including modeling – just think about Madeline Stuart, a young woman who is redefining what a runway model looks like. More and more opportunities for employment are available as acceptance in society increases and negative offensive stereotypes are dismantled.
People with Down syndrome can have a job and live independently as adults with minimal assistance from loved ones. Many of them live fulfilling lives of career success, lasting friendships, and happy marriages.
What’s more, people with Down syndrome experience life in much the same way as typical people do. They have a wide array of emotions and can form deep emotional bonds. They can also suffer from the same mental issues typical people do, like anxiety and depression. That being said, romantic connections can also be part of the life of an adult with Down syndrome and many people with this condition actually get married and create families of their own.
The only obstacles standing in the way of a ‘normal life’ for people with Down syndrome are stereotypes and discrimination.
Misconception 3: Language doesn’t matter
Remember when we said that actually, people with Down syndrome experience the same emotions typical people do? And how they can too suffer from depression and anxiety? Well, the language used to talk about people with Down syndrome can have an impact too.
Language matters because it can and historically it has been used as a weapon of oppression. So, let’s use it instead to promote acceptance and understanding. Let’s be mindful of the words we use to talk about people who have been excluded from society for far too long.
You have probably noticed the language we use in this post and the number of times we took the time to write ‘people with Down syndrome’. That’s because Down syndrome is a condition, not an illness or a disease and it does not define who a person is. Instead of ‘Down’s baby’ you can take the time to say ‘a baby with Down syndrome’. Instead of referring to people who don’t have Down syndrome as ‘normal’, you can call them ‘typical’. Also, remember that people don’t ‘suffer’ from Down syndrome – as we said, it’s a syndrome or a condition, not a disease – they ‘have’ Down syndrome. And most importantly, don’t use the word ‘retarded’ to describe people with cognitive disabilities or as an insult – it implies that people who experience developmental challenges are in fact, simply incompetent.
If you have more questions or concerns about language, consult the Preferred Language Guide of the National Down Syndrome Society. And if you’re wondering how else you can be a good advocate and raise awareness, take it to social media with the hashtag #LotsOfSocks. You can wear the official mismatched socks of World Down Syndrome Day or you can put on any brightly colored socks from two different pairs you have at home and take a picture of them. Don’t forget to post the picture on social media with the official hashtag (#LotsOfSocks) and maybe even a link to our article to dispel the myths and misconceptions about people with Down syndrome.