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People with trisomy 21, or Down’s syndrome, struggle with many very serious comorbidities. – These children are not as light in the world as reported in the media – says prof. Alicja Chybicka, pediatrician and pediatric hematologist. On March 21, we celebrate World Down Syndrome Day.
- Down syndrome is associated with mental retardation and a distinctive appearance. But it is also heart defects, diseases of the digestive system, changes in the genitourinary system, epileptic seizures
- People born with trisomy 21 often have no chance of an independent life and are doomed only to parental care
- Parent: Nobody is interested in adult Down syndrome, nobody supports them, nobody gives them a good quality of life. Which they deserve, because they are alive
- You can find more such stories on the TvoiLokony home page
“Five” of What
Patryk Jaki, MEP of the PiS party, together with his wife are raising their son Radek, who was born with Down syndrome. The politician very often posts photos on the Internet in which he shows his happy family.
The MEP has spoken about abortion many times and is categorically against termination of pregnancy when the fetus shows trisomy 21.
In one of his posts, responding to the 2020 judgment of the Constitutional Court on abortion, the politician described his “Five for Children”.
In his social media, he stated, inter alia, that “people with Down syndrome live, work (often independently) all over the world and are happy”. It is difficult to argue with Jaki’s opinion about happiness, but there are many examples that such people work.
For example in Wrocław, where before the outbreak of the coronavirus pandemic, the “Równik Cafe”, which mainly employs people with Down syndrome, prospered.
But the Wrocław cafe is an absolutely unique place, a phenomenon on a national scale, and it would not have arisen if it were not for the parents of the Association of Psychostimulation Creators and Supporters and scientists from the University of Wrocław.
It is estimated that about 60 people with Down syndrome live in Poland. And although the current data on people with disabilities in the labor market due to the type of disease are not available, research from previous years shows that the least professionally active and the least working are people with the so-called special diseases, i.e. mentally disabled.
- See also: Lethal defects of the fetus – what does it mean? [WE EXPLAIN]
Damage to numerous organs
However, Down’s syndrome is a serious condition with many defects and ailments. These somatic comorbidities include, for example, defects in the heart, digestive system, changes in the genitourinary system, and epileptic seizures.
– People with trisomy 21 struggle with muscle laxity. And these children are not as light in the world as reported in the media – emphasizes prof. Alicja Chybicka, pediatrician and pediatric hematologist. – And if their quality of life is good, it is only due to the hard work of their parents.
Prof. Chybicka emphasizes that although Down’s syndrome is generally associated with mental retardation and a characteristic appearance, all sufferers suffer from congenital immunodeficiency.
– And therefore: susceptibility to infections. It is worth emphasizing that children with Down syndrome are born with damage to numerous organs, so they have no chance of functioning independently – says the doctor.
Trisomy and mental problems
According to the American research of the National Down Syndrome Society, at least half of all children and adults with Down syndrome have serious mental health problems.
These include general anxiety, repetitive obsessive-compulsive behavior, autism spectrum disorders, and neuropsychological problems characterized by progressive cognitive decline.
The pattern of mental health problems in Down syndrome varies with the age and developmental characteristics of the child or adult with Down syndrome. About 1/3 of people with this syndrome develop social withdrawal over time.
Not all of them will be born alive
Down syndrome affects one child in approximately 800–1 live births, regardless of gender, and is the most common chromosomal abnormality.
The frequency of chromosome 21 trisomy is estimated at 1/700 – 1/900 liveborn babies.
- See also: Prenatal tests – is it worth doing and when? [WE EXPLAIN]
Not all babies with Down’s syndrome have a chance of being born alive, as more than half of pregnancies with trisomy 21 end in miscarriage.
The most important factor that influences the risk of developing the disease is the age of the mother.
Among women at the age of 20, the risk of having a child with Down’s syndrome is 0,067%, and in the case of women at the age of 40, the risk is as much as 15 times greater and amounts to 1%.
Nobody cares about adults with Down syndrome
Little is said about adults with Down’s syndrome in Poland, although it is worth realizing that problems of developmental age stay with them for life. And there are more.
There are many reports in the scientific literature of the symptoms of dementia in people over the age of 40. Neuropathological studies also show that they suffer from Alzheimer’s disease, and they are often affected by autism.
An example is the story of Małgorzata, described by Medonet, whose 30-year-old son was born with Down syndrome, but over time was also diagnosed with autism. Moreover, Piotr cannot hear or speak, so communication with him is difficult.
- Read: “My son is 30 today, and during that time I could only count on myself”
There are many Polish parents in such a situation, they write about their problems, among others, on the teamoldowna.info portal.
“Jarek”, the parent of a child with Down syndrome, referred to the assurances of the Minister of Family, Labor and Social Policy, Marlena Maląg, who spoke in the Sejm about the “For Life” program: “Comprehensive support” for disabled children and their guardians.
The man writes: «Everything looks so beautiful on paper and from the parliamentary rostrum. From what Minister Maląg said, we – parents of children with disabilities live in a country that is a paradise for families. But that’s nonsense! The Law “For Life” is only a list of wishes that will never come true. The present life of a disabled person is vegetation and the more lies there are – the more difficult it is. (…) Nobody is interested in adult Down syndrome, nobody supports them, nobody gives them a good quality of life. Which they deserve, because they are still alive. “
Abortion for Down syndrome
Scientists argue whether trisomy 21 is a lethal defect, which does not change the fact that, according to official data, in 2019 it was the cause of 25 percent in Poland. termination. That’s 271 cases of legal abortions.
In most European countries, the percentage of women who decide to terminate pregnancies in Down’s syndrome is higher, reaching 95%.
The exception is the Netherlands, where women are more likely to give birth to a child with trisomy. It is worth emphasizing, however, that the local health care system provides them with rehabilitation, and support for the family in the form of, among others, numerous day centers.
We encourage you to listen to the latest episode of the RESET podcast. This time we devote it to emotions.
Often times, a particular sight, sound or smell brings to mind a similar situation that we have already experienced. What opportunities does this give us? How does our body react to such an emotion? You will hear about this and many other aspects related to emotions below.
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