What actually is Down syndrome?

They are simply everywhere – because every 600th person has Down syndrome. In Germany there are 50,000 people who have the chromosome number 21 three times. The same number as there are dentists!

What, you too don't know what "Down syndrome" means?
You don't know anyone personally who has Down syndrome?

After reading this text you'll be able to join the conversation.
Many questions will be asked in this article. Questions regarding Down syndrome.
Those questions will be answered by experts.
By adults with Down syndrome. All answers come from the Ohrenkuss editorial team.

Svenja Giesler is a young woman with Down syndrome.
She describes her situation in brief and clear terms:

„I have Down syndrome but I stand by that. I am no alien, because I am how I am. Everyone should understand that and respect me.“ 

Peter Rüttimann, a man with Down syndrome writes:

„I am also disabled, with Japanese Chinese eyes.
I like to eat my dinner with chop sticks because I am Chinese.“

 

Therefore a person with Down syndrome is always recognisable - that's what people believe (if they belong to those who don't have Down syndrome).
It's not true. It's not the person that is recognised - but the fact that the person in question has Down syndrome.

Why is Down syndrome called Down syndrome?
Hermine Fraas writes on the topic:

„The suffering always just comes from the outside.
That's a shame.
I can write a bit about the appearance of my intellectual disability.
I have one chromosome too many, the 21.
The man that described us is called Langdon Down.
He lived in England.
And I look like a Chinese. “

How do you know that you have Down syndrome?

„I don't have it.“ (Lydia Bleibinger)
„Because I can write for Ohrenkuss.“ (Michael Häger)
„I can't ride my bike.“  (Juliane Büge)
„Because I need a bit more support than others.“ (Anna-Maria Schomburg)
„Yes - I am Chinese.“ (Peter Keller)
„I can't organise a trip. / I can't cook independently. / Difficulties regarding money. / I can't live alone.“ (Annja Nitsche)

 „I don't notice it anymore.“ (Angela Fritzen)
„I had a chromosome test.“ (Carina Kühne)
„Other people stare. Can't get a drivers license“( (Andrea Wicke)

How do you recognise a person with Down syndrome?

„By the looks.“ (Hermine Fraas)
„By the face, by the movement.“ (Julia Bertmann)
„They look different. That's tricky.“ (Julian Göpel)
„You can tell by the eyes that are almost geometrically even, by the hands 'simian crease' with a line across the palm of the hand has, and the body size on average is often small." (Julia Keller)
„Already as a child I played with the little boys and also I was very happy about that. I kept quiet earlier-on too, about my Down syndrome, and they took me as I am and I was also very happy about that." (Hermine Fraas)

Does it bother you that you have Down syndrome?

„No not really, I stay how I am, and like this will be happy.“ (Judith Klier)
„Yes, because I can't read and write properly.“ (Michael Kohl)
„Well - sometimes. If someone accuses me, that I'm disabled.“ (Annja Nitsche)
„It bothers me when other people look at me and think: I can't be seen with her. She isn't normal. This uncertainty and the glances, how they look at me, bothers me enormously.“ (Julia Keller)
„No, even so I can learn a lot."  (Carina Kühne)
„It bothers me a lot. Lots of people laugh at me.“ (Angela Fritzen)
„No, I don't know any different.“ (Claudia Feig)
„I want to get my license. I know I can't because I have Down syndrome.“ (Andrea Wicke)
„Yes, bothers me, I would like to be able to ride a bike. I would like to be able to do calculations.“ (Juliane Büge)
„Yes, because I would like to be normal. Because with Down syndrome a lot you simply don't understand.“ (Christian Janke)