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Managing the ‘Down’ in Down’s syndrome

Down's syndrome is a woefully misunderstood condition. With the right environment, children with the condition can learn, grow and thrive, and lead full and happy lives A prenatal Down's syndrome diagnosis is usually discussed in hushed whispers. Registered in silent denial. And accepted in tearful resignation. Visions of football practices and dance recitals are eclipsed by thoughts of cognitive therapy and trips to the hospital. Most parents feel an anticipatory sense of gloom, uncertain about their next steps. All because the condition is woefully misunderstood. Understanding Down's syndrome Children and adults with Down's syndrome are just like you—with qualities and personalities unique to them. The condition presents intellectual and developmental setbacks that could range in severity from mild to severe. While milder forms of the condition have little bearing on the overall health of the person, more severe forms may be associated with serious cardiac problems. People with Down's Syndrome may have specific attributes, including a small head, a flattened face, a short neck, slanting eyes, small ears, poor muscle tone, broad palms, stubby fingers, great flexibility, a small build, and white speckles on the iris (known as Brushfield's spots). Children with Down's syndrome may be comparable to their peers in height, but remain shorter, on average, in adulthood. Despite its shortcomings, people born with the condition are capable of living a full life, and achieving just as much, if not more, than the rest of us. Debunking the stigma around Down's Syndrome There's much ado about Down's syndrome, and by the same token, a great deal of stigma around it. Here are some facts you should know: People with Down's Syndrome have an average life expectancy of over 60 years; a huge improvement on the 25-year life average of the previous generation Down's syndrome isn't a dampener of dreams; people with the condition go on to open businesses, become performers and play instruments People with Down's Syndrome can process emotion, make themselves understood, and effectively comprehend what you are telling them The majority of children with Down's Syndrome experience mild to moderate intellectual delays, and most are able to participate in specialised educational

programmes, sports, music, and many other social, vocational and recreational activities People with Down's Syndrome are cherished members of their families and do not require institutionalisation Adults with Down's Syndrome are employable and, in a landscape that increasingly encourages diversity, being sought across industries for various positions People with Down's Syndrome exhibit good interpersonal skills, forming close friendships and relationships, and even going on to marry

Science and Down's syndrome Science is making tremendous progress in identifying the genes responsible for the attributes related to Down's syndrome. In the times to come, it may be possible to prevent, control and even treat the setbacks caused by the condition. At Rainbow Hospitals, our Department of Neurosciences is a centre of excellence in neurological care and treatment. Our pediatricians have expertise in managing Down's syndrome, and our child specialists work with your child through holistic therapy pointed at improving cognitive, social and motor skills. Children with Down's syndrome can learn, grow and thrive in compassionate, inclusive environments at home and at school. There is a wealth of support available for parents and families of children with Down's syndrome. From online support groups to community organisations, try to share your journey with fellow, like-minded parents. It's amazing how much support, solidarity and strength you can find in kindred spirits.

Dr. Subodh Raju

Consultant - Neurosurgeon

Rainbow Children's Hospital, Banjara Hills