Stigma is the disease those with Down’s syndrome battle

  • | Tuesday | 13th March, 2018

“Children with Down’s syndrome do not have a disease. The same children who are described as “suffering from a disease”.“It isn’t the child who suffers as much as the family who have to battle the stigma associated with the syndrome,” said Surekha Ramachandran, president, Down Syndrome Federation of India. “Earlier, children with the disorder didn’t die because of infections, but due to negligence. They are just born with a condition, which makes them prone to cardiac diseases, pneumonia and influenza,” said Dr Priya Chandrashekar, a consultant pediatrician. When her daughter was diagnosed with the disorder 37 years ago, doctors gave her not more than a year to live, she is now a yoga teacher.

Chennai: A week after a renowned oncologist took exception to cancer being equated with corruption, a group of activists and doctors have appealed to stop associating the word ‘suffering’ with Down’s syndrome.The call, made on Tuesday at a meeting in the city held between doctors, parents, and those having the condition , discussed ways to fight the stigma associated with Down’s syndrome.Shy children with thick spectacles hid behind their mothers, adolescents beamed as they held their certificates and medals for cameras — these were the children with Down’s syndrome at the meeting. The same children who are described as “suffering from a disease”.“It isn’t the child who suffers as much as the family who have to battle the stigma associated with the syndrome,” said Surekha Ramachandran, president, Down Syndrome Federation of India. When her daughter was diagnosed with the disorder 37 years ago, doctors gave her not more than a year to live, she is now a yoga teacher. “Earlier, children with the disorder didn’t die because of infections, but due to negligence. Doctors felt it was a waste of time to treat them,” she said.Associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability, the genetic disorder, also known as trisomy 21, is caused by the presence of all or part of a third copy of chromosome 21. “Children with Down’s syndrome do not have a disease. They are just born with a condition, which makes them prone to cardiac diseases, pneumonia and influenza,” said Dr Priya Chandrashekar, a consultant pediatrician. But it can be avoided with timely intervention, stressed Chandrashekar, adding that nutritious food and early therapy could bring these children on a par with others, before they start school. Since thyroid is another risk, Jayashree Gopal, senior consultant, diabetes and endocrinology at Apollo Hospitals, emphasised on the need for screenings once in six months till four years of age.Experts said these children have a lot of untapped potential and the examples are aplenty – a boy working as a swimming coach in Bengaluru, a Pune girl who is an actor.

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