Dr Tehreem Fatima
Down syndrome occurs when an individual has an extra partial (or whole) copy of chromosome 21. It is not yet known why this syndrome occurs, but Down syndrome has always been a part of the human condition. It exists in all regions globally and commonly results in variable effects on learning styles, physical characteristics and health.
Adequate access to health care, early intervention programmes, inclusive education, and appropriate research are vital to the growth and development of the individual.
In December 2011, the General Assembly declared 21 March as World Down Syndrome Day (A/RES/66/149). The General Assembly decided, with effect from 2012, to observe World Down Syndrome Day on 21 March each year. To raise public awareness of Down syndrome, the General Assembly invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Down Syndrome Day appropriately.
The estimated incidence of Down syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. Approximately 3,000 to 5,000 children are born with this chromosome disorder each year.
The quality of life of people with Down syndrome can be improved by meeting their healthcare needs, including regular check-ups with health professionals to monitor their mental and physical condition and to provide timely intervention be it physiotherapy, occupational therapy, speech therapy, counselling or special education. Individuals with Down syndrome can achieve optimal quality of life through parental care and support, medical guidance, and community-based support systems such as inclusive education at all levels. This facilitates their participation in mainstream society and fulfilling their personal potential.
The message of With Us Not For Us is key to a human rights-based approach to disability.
We are committed to moving on from the outdated charity model of disability, where people with disability were treated as objects of charity, deserving of pity and relying on others for support.
A human rights-based approach views people with disabilities as having the right to be treated fairly and has the same opportunities as everyone else, working WITH others to improve their lives.
Therefore, there is a dire need to create awareness. It is an administrative and social cause. Like all over the world, the issue of a down syndrome exists in Pakistan. Hence, governmental organizations in this regard need to upgrade their service delivery models. Rehabilitation of marginalized people should be the priority. Alongside awareness campaigns, administrative resource mobilization is also critical. Neither state nor society can abandon down syndrome-affected people. Therefore, 21 March is specifically celebrated to create awareness in the countries to deliver for disabled persons.
