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State Of Down Syndrome In India: Facts & Figures

By Dhwani Jerajani +2 more

Down Syndrome affects approximately 23,000-29,000 children born in India every year. Though the numbers are alarming, there is very little open dialogue on this topic in India. Though it is not fatal in developed countries but in India it continues to be fatal. This is mostly because of the low awareness levels and outdated medical facilities.

What is Down Syndrome?

It is a congenital disease arising due to a defect in chromosomes, which results in intellectual impairment and physical abnormalities. This is a gene defect at birth or before birth and is a lifelong condition. Normally a person has 46 chromosomes but a person suffering from this condition has 47 chromosomes and having an extra chromosome disrupts the way the body and mind function. Kids suffering from this genetic disease are at a greater risk of childhood leukaemia, heart defects and immune and endocrine system dysfunction.

Down Syndrome

People suffering from Down Syndrome usually have flat faces, upward slant eyes, a short neck, a single deep crease across the palm of their hand, small stature and low muscle tone. They may or may not possess all of these characteristics. It was in the late nineteenth century when Langford Down who is also known as the ”father” of the syndrome published an accurate description of a person suffering from this condition.

Scientists have identified three different types of Down Syndromes:

1. Trisomy 21: This occurs when there’s an error in the cell division called ‘nondisjunction’ which results in three chromosomes in an embryo instead of two.

2. Mosaicism: This occurs when there’s a mix of two types of cells, some containing 46 chromosomes and some with 47. The ones with 47 contain the extra 21 chromosomes.

3. Translocation: This type is relatively less common. In this scenario, the number of chromosomes remains 46 but an additional or partial copy of the chromosome attaches to another chromosome.

Quick down syndrome facts:

  • Chromosome disorders occur in approximately 1 out of 166 births in India, with 1 out of every 830 children being born with Down Syndrome  
  • Apart from the physical characteristics, children affected with Down Syndrome also have learning disabilities
  • There are no known cures or causes for this genetic disorder, however, the older the mother is the higher the chance of this condition occurring  
  • People with Down Syndrome are also more likely to get infections and other health issues (leukaemia, early Alzheimer’s)
  • Educational, social and medical interventions can not only extend the life expectancy of people with Down Syndrome to 50-60 years (such as in developed nations) but also drastically improve the quality of life.

Down Syndrome in India: India has the highest number of people suffering from Down’s Syndrome in the world. The numbers are alarming but what is more frightening is the fact that this condition is fatal in India due to negligence, lack of awareness and obsolete medical and technological facilities. This congenital condition often comes with congenital heart diseases which can be treated. However, a vast majority of Indian doctors advise against surgery for infants whose body weight is less than 10KG because they are of the opinion that such kids have a slim or poor chance of survival. This leads to further complications like pulmonary hypertension, which can lead to a child’s death. Out of the 23,000 to 29,000 kids born with Down Syndrome in India every year, the survival rate is only 44%. Improved life expectancy in rich nations has been mainly attributed to early surgical intervention and better medical care.

There are a handful of organizations that are dedicated to helping and supporting individuals suffering from this congenital condition, to name a few: Down Syndrome Federation of India, co-founded by Dr Rekha Ramachandran offers daycare services to individuals with special needs. This organization was established in the year 1984 and today they provide services not just to kids in India but also operates in the Middle East. They also hold annual awards Another organization working for the same cause, the Down Syndrome Care Association, registered by the Govt. of Maharashtra, started in the year 2006 caters to people suffering from this medical condition.   

As a society, we need to increasingly work towards spreading education, knowledge and acceptance of Down Syndrome and the diseases that come with this condition.

Disclaimer:  The information included at this site is for educational purposes only and is not intended to be a substitute for medical treatment by a health care professional. Because of unique individual needs, the reader should consult their physician to determine the appropriateness of the information for the reader’s situation.

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