With the country being home to the largest number of people with Down Syndrome, the Capital hosted the first India-International Down Syndrome Conference at India Habitat Centre on Saturday. The first day of the event, which is set to wrap up on Sunday, saw speakers emphasise the lack of awareness on this condition, which is becoming a living nightmare for thousands.
Genetic disorder
Down syndrome (DS or DNS), also known as Trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with delayed physical growth, characteristic facial features and mild to moderate intellectual disability. The conference is intended to help those afflicted and their families.
The event was inaugurated by Dr. Surekha Ramachandran, president of Down Syndrome Federation, who welcomed Mr. Ajit Doval, the National Security Advisor and Mr. Yugi Afanasiev, UN Resident Coordinator and other speakers from around the world.
Laying down the event’s goals, Ms. Ramachandran said: “This year’s conference will see leading experts in Down Syndrome. We intend to deliver a programme consisting of research and scientific papers, along with hands-on workshops for people with the condition.”
Bond with siblings
The programme saw a speech by Dr. Brian Skoto — a board-certified medical geneticist, and Co-Director of the Down Syndrome programme at Massachusetts General Hospital — emphasised the importance of a good relationship and support among siblings where one of them is afflicted with the condition.
Echoing his sentiment, Neha Bora, a Delhi University student, shared the experience of growing up with her 18-year-old brother with Down Syndrome. “India is a hostile country for the specially-abled. They are eve teased and bullied regularly. I feel if good relationships are built at home, these kids can overcome such challenges,” she said.
Academic inclusion
Issues like schooling and medical care for these children were also discussed. Ms. Deepa Garwa, a self-advocate, emphasised that academic inclusion was as important as social inclusion. She cautioned parents about the approach where societal inclusion takes away the child's confidence so much so that no attention is paid to academic inclusion. Ms. Ramachandran has also organised special help groups to assist families in identifying the problem in their children and provide solutions for their upbringing.
Meanwhile Dr. Nina Vaidya focused on a holistic approach and provided a road map to parents to help their children with certain therapies without spending too much to obtain private help.
As of now, the government does not provide any medical support to children with this condition and no insurance company covers this disorder.
