World Down Syndrome Day: Act Collectively – Don’t Leave Anyone Behind

World Down Syndrome Day is celebrated around the globe on 21st March every year. It was established by Down Syndrome International (DSi) in 2006. In 2011, DSi proposed that 21st March should be celebrated as World Down Syndrome Day and the date should be incorporated into the United Nation’s (UN) calendar of global health awareness days. Since 2012, the UN has been officially observing World Down Syndrome Day on 21st March. On this day, everyone across the world celebrates the lives, abilities and accomplishments of people living with Down syndrome.

On World Down Syndrome Day, DSi calls to action people from all walks of life to create a single global voice to advocate for the human rights and wellbeing of people living with Down syndrome. On this day, many events and activities are organized, in which people with Down syndrome and their families, friends, colleagues, and caregivers participate to generate public awareness about the condition.

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Aims of World Down Syndrome Day

The major aims and objectives of World Down Syndrome Day include the following:

• Provide support to people with Down syndrome through access to essential information, consultation, and counselling
• Empower people with Down syndrome and their representative organizations to advocate for their basic human rights
• Reach out to key stakeholders, including health professionals, educators, counsellors, public bodies, policymakers, media persons, and the wider community for betterment of the lives of people with Down syndrome

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History of World Down Syndrome Day

In December 2011, the UN General Assembly, through a resolution (A/RES/66/149), declared 21 March as World Down Syndrome Day, which took effect from 2012. Since then, the UN General Assembly has continuously encouraged its Member States, organizations within the UN framework and those outside it, as well as non-governmental organizations (NGOs), the private sector, and civil society to collectively observe World Down Syndrome Day in a bid to generate much-needed public awareness about the condition.

Interestingly, the date (21st March) for World Down Syndrome Day was selected as it is the 21st day of the 3rd month, which signifies the unique triplication (trisomy) of chromosome 21, which is responsible for Down syndrome.

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Theme for the 2020 World Down Syndrome Day

The theme for the 2020 World Down Syndrome Day is ‘We Decide’, which highlights that all people with Down syndrome should be allowed to participate in the decision-making process that concerns their own health and wellbeing. This theme is inspired by the UN’s Convention on the Rights of Persons with Disabilities (CRPD), which promotes effective and meaningful participation as an essential component of the principles of human rights activism.

Basic Aspects of Down Syndrome That Everyone Should Know

Down syndrome – also known as trisomy 21 – is a genetic disorder that occurs due to the presence of 3 copies of chromosome 21. Thus, whereas a normal person has 46 chromosomes, Down syndrome patients have 47 chromosomes. This abnormal number of chromosomes is responsible for differences in appearance, learning abilities, physical characteristics, and health of these patients compared to normal healthy individuals.

Down syndrome is named after the British physician Dr. John Langdon Haydon Down, who was the first to describe this genetic condition in 1862. This genetic condition affects people of all races, ethnicities and economic strata. A Down syndrome child can be born to mothers of any age, although the risk generally increases with age. For example, a 35-year-old woman has a 1 in 350 chance of conceiving a Down syndrome baby, while in case of a 40-year-old woman, the chance increases to 1 in 100.

Some of the major characteristics of Down syndrome patients include the following:

• Flat face
• Eyes slanting upwards
• Small nose with flat nasal bridge
• Ears having irregular shape
• Large tongue compared to mouth
• Big space between big toe and its adjacent toe
• Decreased muscle tone
• Learning difficulties
• Congenital heart defects Hearing loss
• Vision problems

Down Syndrome: Facts & Figures

• Incidence of Down syndrome varies between 1 in 1,000 to 1 in 1,100 live births worldwide
• 3,000 to 5,000 children are born with Down syndrome every year
• 95 percent of Down syndrome patients exhibit trisomy 21
• Down syndrome affects all races and ethnicities equally
• Black babies with Down syndrome have a lower chance of survival beyond their first year of life compared to white babies
• 80 percent of children with Down syndrome are born to mothers below the age of 35 years
• A mother having a Down syndrome child has a 10-15 percent risk of having a second child with the disorder
• If the father is a carrier of the translocation gene, there is a 3 percent risk that the child will have Down syndrome

Ways to Improve the Lives of People with Down Syndrome

In the case of people with Down syndrome, some of the areas of life that are likely to be affected include the following:

• Personal relationships
• Professional relationships
• Intellectual development
• Physical and mental health
• Educational attainments
• Work and livelihood
• Recreation and leisure
• Participation in public life

In order to improve the quality of life of people with Down syndrome, especially children, it is very important that their healthcare needs are adequately met. This will enable them to mix with mainstream society and attain their full potential. Some of the ways to improve the quality of life of children with Down syndrome include the following:

• Regular health check-ups
• Monitoring of physical growth
• Monitoring of mental development
• Provision for timely intervention, such as the following:
• Medical guidance
• Physiotherapy
• Occupational therapy
• Speech therapy
• Counselling
• Parental care and support
• Community-based support systems
• Special education services

Rashtriya Bal Swasthya Karyakram (RBSK): An Important Child Health Initiative by the Government of India

RBSK is a very important child health initiative by the Government of India, which falls under the National Health Mission (NHM). The major objective of RBSK is early detection and early intervention in infants and children from birth to 18 years of age. The program aims to cover 30 selected health conditions, one of which being Down syndrome. The program focuses on 4 main diagnostic areas, aptly termed as the 4 ‘D’s:

• Defects at birth
• Deficiencies
• Diseases
• Developmental delays including disability

Conclusion

It is evident that access to adequate healthcare, early intervention programs and inclusive education will go a long way to promote the physical and mental wellbeing of people with Down syndrome. In fact, it is encouraging to know that due to advancements in medical science, people with Down syndrome are living longer and healthier lives.

References:

1. Down Syndrome - United Nations - (https://www.un.org/en/observances/down-syndrome-day)
2. World Down Syndrome Day - Down Syndrome International - (https://www.worlddownsyndromeday2.org/)
3. Genes and Chromosomal Diseases: Down Syndrome - World Health Organization (WHO) - (https://www.who.int/genomics/public/geneticdiseases/en/index1.html)

Source-Medindia