Growing old with down syndrome

About 50 years ago, people with Down syndrome had a life expectancy of less than ten years. This has changed radically. Today, they easily live to be 60 and older and often lead full lives.

Children with trisomy 21 do not only look different from children without Down syndrome. They are different. Their overall development is slower than in children without trisomy 21. This affects motor skills, speech and mental development, and they have to deal with many diseases from the very beginning. About 50.000 people with trisomy 21 live in Germany.

About 120 different symptoms appear, especially in children with Down syndrome. This includes mainly heart defects. A few decades ago, this was still a big problem. "Congenital heart defects can be operated on much better today than a few decades ago. That’s why life expectancy is now much higher than it was in the 1970s, says Gerhard Hammersen. He is the honorary head of a Down syndrome outpatient clinic in Nuremberg. He practiced there for a long time as a pediatrician at Cnopf’s Children’s Hospital and followed the development.

Something has changed

About fifty, sixty years ago, heart surgery was rare in children with Down syndrome, and even when surgery was performed, complications were common. "I have seen a 16- or 17-year-old girl who was born with a complex heart defect", tells Hammersen. At that time, such cases had only just begun to be operated on. "Since she was 14, she suffered more from her heart defect and vascular changes. In her case, infections came along, surgery was postponed, and then at some point it was too late. She died in agony", Hammersen recalls. "This is a combination that we thankfully no longer experience today."

Medicine has learned

A blood test shows whether the child may be born with trisomy 21

If necessary, children with Down syndrome today undergo heart surgery in their first year of life. This also prevents complications later on. In the past, it was not uncommon for certain heart problems to appear in adolescence because the child had not had surgery at an early age. "In the 1980s, doctors learned that children with trisomy 21 needed to be treated differently. I think there was a different attitude toward people with Down syndrome at the time. Today we know more", says Hammersen.

But it’s not just about the heart. Often the gastrointestinal tract is affected by the disease, for example when the duodenum is not permeable. "These children need surgery on the second or third day of life", Hammersen explains. In the meantime, this is hardly a problem and ultimately helps to prolong life. Often, however, surgery is not enough. Other diseases affect, for example, the hematopoietic system. This also includes leukemia.


People with Down syndrome are much more likely to develop leukemia than people without trisomy 21. And there, too, the doctors had to learn a thing or two. "During the first four or five years of life, children with trisomy 21 develop a special form of leukemia. It occurs quite rarely in children without trisomy 21, but is relatively common in people with Down syndrome. This leukemia has a quite favorable course in people with trisomy 21. Accordingly, they can be treated with a much milder form of chemotherapy than is the case with children without Down syndrome.

"In the past, the question was whether these children could be expected to undergo chemotherapy at all. There was also the consideration that these children could not intellectually comprehend what we were doing to them with this treatment. After all, it is a therapy that massively interferes with the body, Hammersen explains. In the case of an infant without Down syndrome, however, such treatment would not have been considered at all", Hammersen continues.

Madeline – A model with Down syndrome at New York Fashion Week

Expectations have changed

In the ’70s and ’80s, attitudes toward people with trisomy were different than they are today. Many – also physicians – have hardly trusted humans with down syndrome something. Today we know: If people with Down syndrome are appropriately supported, they can develop well and become relatively independent. "Many people with Down syndrome live in residential communities in adulthood. Then, once or twice a week, a social worker or caregiver might stop by. But otherwise they live relatively independently. In the past, this was unimaginable", says Hammersen.

Smarter than many believe

Today, efforts are also being made to promote creativity and integrate people with Down syndrome into working life as much as possible. This is often difficult, but mostly not because of the people with Down syndrome but because of a lack of readiness in society. Many healthy people do not want to have to be considerate of colleagues with Down syndrome in the workplace. And finally also appropriate places are missing.

Sebastian Urbanski works as an actor. He has Down syndrome.

Development in people with Down syndrome is different and much slower than in people without Down syndrome, and in most cases ends up at a different level, Hammersen said. "But by the same token, there are big differences in the development of people without Down syndrome – from the person who has trouble graduating from elementary school to someone who graduates from college and is an overachiever. And so a corresponding range of developmental possibilities is also found among people with Down syndrome", says Hammersen. Maybe these possibilities are just a little bit shifted.

Disability parade: different, but proud

It’s not the size that counts

Michelle Kraus is 45 years old and of small stature. At the first Disability Pride Parade in New York in 2015, she demonstrated for the rights of people with disabilities. The event is based on the "Gay Pride Parade", who stands up for homosexuals.

Disabled parade: Different, but proud

Marching down Broadway

Whether with a wheelchair, a walker or a guide dog, more than 3,000 people paraded down Broadway in Manhattan during Disability Pride on Sunday. Among other things, they demand better access to public transportation.

Disabled parade: Different, but proud

"I am strong"

Powerful in a wheelchair: With the sign "I am strong" draws the attention of Gerard Mills. The motto of the parade is "Inclusion, Awareness, Visibility".

Disabled parade: different, but proud

The main thing is happiness

Pride is written all over her face: Especially for the parade, Roxanne Fernandez gets a crown put on by her mother. The 14-year-old has Down syndrome. The Disability Pride Parade is for people like her will now take place every year in New York.

Disabled parade: Different, but proud

Prosthesis march

Two prosthetic limbs make it possible to march down Broadway without a lower leg. The banner in the background commemorates the passage of a U.S. disability rights law 25 years ago – the Americans with Disabilities Act.

Disability parade: Different, but proud

Pride in July

Participants without sight march down Broadway with their blind canes. The parade commemorates the law that was passed on 26. July 1990 came into force. New York Mayor Bill de Blasio has declared July "Disability Pride Month" to mark the anniversary explains.

Disabled parade: different, but proud


One demand of participants: to have access to public transportation. Accessible cabs are also an issue. Only about four percent of New York’s famous "Cabs" namely, are accessible to wheelchair users. It’s different in London, for example: every cab there is barrier-free.

Parade of the handicapped: different, but proud

The little ones from America

These two small participants proudly carry the sign with the inscription: "The little ones from America". Next to "disabled and proud" there was also the slogan in New York: "Just because I can’t speak doesn’t mean I don’t have a lot to say.".

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