How a Gujarat club is helping build support & battle stigma towards Down syndrome - My Take by Dr Vaishali Hydrabadi

In My Take, Dr Vaishali Hydrabadi from the Ahmedabad chapter of the Down Syndrome Welfare Club talks about how their organization's role in building awareness in Gujarat. The club also guides parents' of children with Down syndrome on how to cope with the varied challenges of this disability.

My journey in the field of Down syndrome began in the late 1980s. I was a student of cytogenetics and I began seeing children with Down syndrome who came for chromosome analysis from all over Gujarat and neighbouring states.

In no time I fell in love with them because of their loving, friendly nature. The interaction with the families has continued ever since. I saw the challenges that they faced, both due to the medical conditions a child with Down syndrome may have, and the stigma they face given the near lack of information in society.

Filling the gaps in information

Parents' experience a lot of emotional turmoil as a bleak picture is presented to them by many in the medical fraternity. This adds to the sense of isolation and despair. The lacunae in the availability of right information and guidance became evident.

The Down Syndrome Welfare Club (DSWC) was born out of this need felt for guidance, information, emotional and social support. There was a need felt to build a sense of community support towards addressing the issues faced by parents year after year.

The club is an informal group of passionate professionals, parents, and persons inspired to make a difference in the lives of people with Down syndrome.

Battling myths

The club started taking shape in March 2013, initially with a mission of spreading awareness and getting rid of myths linked with this condition. A group of students and staff volunteers came forward to celebrate World Down Syndrome Day for the first time in Ahmedabad. 21 March 2013 was made memorable for some 50 families with a child having Down syndrome. Since then, we have been celebrating World Down Syndrome Day every year.

Several seminars, workshops and talks by experts in this field like Dr Nina Vaidya, Dr Rekha Ramachandran and others are held regularly as per the needs and demands of parents.

Likeminded people from all over Gujarat have joined hands. The DSWC has now been functioning in different cities as separate chapters. This has helped spread awareness about Down syndrome to a much wider audience.

Public awareness has also been created through events like the cyclothon, Smiling Wheels - 2018. This has helped to influence public perception towards Down syndrome in a big way. The club spreads a positive message about our children's potential, encouraging the typical population to interact and understand their aspirations and challenges, and include them in mainstream society. It creates a balanced image for new parents about what to expect after the birth of a baby with this condition.

We spread hope, guide and support each other to face every day challenges and struggles.

DSWC is growing rapidly and is helping to bring about a positive change in the attitudes of society and parents'. The ultimate goal is to help children with Down syndrome reach their full potential and lead happy, healthy lives.

ALSO READ: Look at the person, not the syndrome! - My Take by Dr Surekha RamaChandran, Chairperson Down Syndrome Federation of India

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