50 years ago people with Down syndrome only had a life expectancy of 10 years. Things have radically changed. Nowadays, many can live fulfilling lives past the age of 60.
In the 1970s and 80s the attitude towards people with Down syndrome was different than today.
Many people — including doctors — believed people with Down syndrome were not capable of anything. Today, we know that if people with Down syndrome are supported properly, they can develop well and become relatively independent.
"Many adults with Down syndrome live in communities. Once or twice a week a social worker or a carer might come by. Otherwise, however, they live relatively independently. You couldn't imagine that in the past," says Gerhard Hammersen, honorary director of a Down syndrome clinic in Nuremberg.
Their aim is to promote creativity and to integrate people with Down syndrome into working life. This is difficult due to a lack of will amongst society — rather than anything to do with the people with Down syndrome themselves.
People with Down syndrome — also known as trisomy 21 — physically develop slower than children without the extra chromosome. Oftentimes this affects motor skills, language and mental development, and they often have to cope with illnesses from a young age.
About 120 different symptoms of the disorder occur, especially in children, including heart defects. A few decades ago, this was a major problem.
"Congenital heart defects can be operated on much better today than a few decades ago. This is why life expectancy is now much higher than it was in the 1970s," says Hammersen, who has practiced for many years as a pediatrician at the Cnopfschen Children's Hospital.
Something has changed
About 50 or 60 years ago, heart surgery was rare in children with Down syndrome, and even when surgery was performed, complications were common.
"I experienced a 16- or 17-year-old girl who was born with a complex heart defect," explains Hammersen.
At that time, we had only just started to operate on such cases.
"She had suffered from her heart defect and vascular changes since she was 14. She had additional infections, the operation was postponed, and then it was too late at some point. She died in agony," recalls Hammersen.
"This is something that we no longer experience today, thank God. Medicine has learned a lot."
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If necessary, children with Down syndrome are operated on in the first year of life as this prevents complications later on. In the past, it was common for certain heart problems to occur during puberty because the child had not undergone surgery at an early age. "In the 1980s, doctors learned that children with Down syndrome had to be treated differently. I think there was a different attitude to people with Down's syndrome at the time. Today we know more," says Hammersen.
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But it's not just about the heart. The gastrointestinal tract is often affected by the disease, for example when the small intestine is impermeable. "These children have to undergo surgery on the second or third day of their lives," explains Hammersen. This is not a problem anymore and ultimately leads to a prolonged life. Often, however, an operation is not enough. Other diseases affect the hematopoietic system, for example. This includes leukemia.
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Down syndrome and leukemia
People with Down syndrome are much more likely to develop leukemia.
"During their first four or five years, children with Down syndrome can develop a special form of leukemia. It occurs quite rarely in the general population, but is relatively common in people with Down syndrome."
"In the past, the question was whether these children could be expected to undergo chemotherapy at all. In addition, there was the consideration that these children could not intellectually understand what we were doing to them with this treatment. After all, it is a therapy that has a massive impact on the body," explains Hammersen.
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The development of leukemia in people with Down's syndrome is different and much slower than in people without Down syndrome, says Hammersen.
"But there are also big differences in development among people without Down syndrome — from those who have problems with graduating high school to those who are university graduates and high flyers. And so there is also a range of opportunities for people with Down syndrome," adds Hammersen.