Downside Up queries official Russian figures on Down Syndrome
On 15 August, a summary of data was published by the Ministry of Health for 2018. Over the past five years, there has been a 30% increase in the number of people with Down Syndrome in Russia. Sufferers are most often found in Ingushetia, the Altai Republic and Kostroma, and rather less in Primorsky district and Chelyabinsk and Penzenskaya oblasts – in all, around 19,000 people.
Tatyana Nechaeva, a member of Downside Up’s expert council, called the Ministry’s figures “misleading” in conversation with ASI. According to the Ministry’s 2017 figures, 18,385 people were registered as having Down Syndrome, but this number only includes those who have applied to medical institutions for a variety of different reasons. Nechaeva believes the Ministry’s figures don’t reflect the real number of “sunny”* people in Russia – in fact, there are many more of them.
“The same figures indicated that there were 1030 children and adults with Down Syndrome living in Moscow. However, according to our database, there are around 1100 Down Syndrome children in the capital alone so I believe the statistics are skewed”, said Nechaeva.
The charity collects its own data based on the requests it receives for help, as well as using a model that estimates the birth rate and number of people with Down Gert de Graaf Syndrome.
The model shows that there are 51,000 people living with Down Syndrome in Russia, with one in 700-800 children born with the condition, according to Downside Up. A particular region or city has no bearing on the chances of giving birth to a “sunny” child, the expert added.
Update as at 10.05 on 16 August
This article corrects a previously reported error that one child in every 100 is born with Down Syndrome. According to Downside Up, the figure is one in every 700-800 children.
*The term “sunny” is often used to refer to people with Down Syndrome because of their cheerful, happy and smiling disposition, with the children also being extremely affectionate and well-behaved.