CNN Vital Signs addresses social inclusion of people with Down syndrome

In Brazil, one in every 700 children are born with trisomy 21, that is, the Down’s syndrome 🇧🇷 It is a genetic alteration caused by an error in cell division during the embryonic stage. Instead of two chromosomes in pair 21, there are three.

With this, some typical physical characteristics are developed, such as slanted eyes, flattened nose, rounded face and small ears, for example. In addition to some related health problems, such as heart disease in 50% of this population, decreased muscle tone and strength (hypotonia), as well as intellectual impairment.

Science still hasn’t been able to determine exactly why this genetic mutation happens, but with the advancement of medicine and inclusion and combating stigma, people with T21 are living longer and with a better quality of life. Data from the Information System on Live Births (Sinasc), indicate that 1,978 cases of Down syndrome were reported from 2020 to 2021 in the country.

The topic is highlighted by CNN Vital Signs From this week. The program presented by the cardiologist Roberto Kalil airs this Sunday (27), at 7:30 pm, reinforcing the diversified content with the brand CNN Soft 🇧🇷

early stimulation

According to experts, as soon as these children are born, they need to be inserted into early stimulation programs.

“Physical therapy, speech therapy and occupational therapy activities, taking advantage of the moment of brain neuroplasticity so that they develop and are able to overcome the commitments that this genetic alteration imposes”, says Zan Mustacchi, director of the São Paulo Center for Clinical Studies and Research.

Physician Ana Cláudia Brandão, from the Center for Pediatric Specialties at Hospital Israelita Albert Einstein, says that early childhood stimulation programs allow for expanding the skills development of people with Down syndrome.

“At the beginning of the last century, the life expectancy of those born [com trissomia do 21] was 9 years old. In the 1980s, she was approximately 25 to 30 years old. And, now, we have a life expectancy of 60 years because the issue of correcting the congenital heart disease was a factor that had an impact on the survival of these people”, says Ana (watch the interview in the video above 🇧🇷

Pediatric cardiologist Maria Lúcia Passarelli says that children can be operated on shortly after birth. “The evolution of cardiac surgery in Brazil has been fantastic over the last 20 years, we haven’t lost anything to any country in the world. We have great surgeons who are only pediatric. We are proud to show the Brazilian results also in Down syndrome”, says Maria Lúcia, pioneer of this type of procedure in the country in patients with T21.

Social inclusion and quality of life

When talking about improving quality of life experts are unanimous in highlighting the importance of inclusion in society.

“Children are in regular schools, teenagers are leaving, having a normal life, and they are going to the job market when they become adults. So, all this contributed”, says Aleksandro Belo Ferreira, endocrinologist and pediatrician responsible for the Down syndrome clinic at Santa Casa de São Paulo. The specialist is also a co-founder of Elo 21, an advanced center for genetics and integrative health focused on the quality of life of people with T21 and their families.

The Down Syndrome Foundation, in Campinas, and the Special Chefs Institute, in São Paulo, are institutions that work with inclusion and participate in the program.

“We have already managed to employ more than 270 people in the market with a formal contract under the CLT regime”, says Lenir Santos, doctor in public health and founder of the institution. “What we intend here is that since childhood you know that you have Down syndrome to build your identity […] Let her fight for her rights. It is not because you have Down syndrome or a visual impairment that you will be, let’s say, denied living in society and enjoying the same opportunities”.

Founder of Special Chefs, Simone Lozano says: “We have been working on inclusion through gastronomy since 2006 because I wanted to give a little of my time and energy to someone else”, she says. “We currently serve 300 students a year for free and the intention is autonomy and the job market is a consequence”.

“What I would say to these new parents who are with these babies is that they believe in their children”, says Ana Cláudia Brandão, a physician at the Center for Pediatric Specialties at Hospital Albert Einstein. “Place them in the world, challenge them, have good expectations because they are children who learn, play, run, talk, work, get married and bring a lot of joy to these families”, she concludes.