Importance of Down Syndrome Awareness Month


Importance of Down Syndrome Awareness Month

Incidences of Down syndrome are estimated to occur in 1 in 1,000 to 1 in 1,100 live births globally. Each year, around 3,000 - 5,000 newborns are affected by this chromosomal abnormality1. Despite this, people are quite unaware of the physical health, mental health, and overall well-being of individuals with Down syndrome. 

Hence, it is important to educate oneself about the syndrome to help them live their lives better. This is why initiatives like World Down Syndrome Day awareness are necessary. Celebrating Down syndrome awareness month ensures that more and more people are aware of the condition so that they can provide support to individuals in the best possible way. Fortunately, to move ahead with this initiative, 21st March is recognised as World Down Syndrome Day. Read on to know more! 

World Down Syndrome Day

The first-ever World Down Syndrome Day was observed in 2006. Later, in 2012, the UN General Assembly declared 21st March as Down Syndrome Awareness Day globally. Because the syndrome is brought on by the replication of chromosome 21, i.e., a biological condition, the authorities issued the date on this date.

Each year, this day raises awareness of this genetic condition, supports the rights of individuals who are affected and strives to incorporate them into society at large.

The General Assembly invites all Member States, United Nations agencies, other international bodies, and civil society, including non-governmental organisations and the private sector, to observe World Syndrome Day appropriately in an effort to increase public awareness of this  medical condition.

The month includes scheduling routine examinations with medical professionals to monitor their physical and mental health and to receive timely intervention, such as speech therapy, occupational therapy, counselling, physiotherapy, or special education. Through medical advice, community-based support systems including inclusive education at all levels, and parental care and support, it is anticipated that individuals with Down syndrome can attain the best possible quality of life.

What is Down Syndrome? 

Simply put, a person with Down syndrome carries an additional half or complete copy of chromosome 21. This is an uncommon genetic disorder. In other terms, it occurs when chromosome 21 replication results in an abnormal cell division.

The condition is widespread around the world. However, it differs from person to person based on physical attributes, learning styles, and overall health. Generally, Down syndrome involves developmental disorders. In some cases, the conditions might show up as mild to severe learning difficulties and in some cases, individuals might face severe health problems like heart diseases and gastrointestinal issues.

Causes of Down Syndrome

Children get genes through their parents. These genes reside in the chromosomes. Practically, each of the baby's developing cells is expected to receive 23 pairs of chromosomes, for a total of 46 chromosomes. The mother and father each contribute half of these chromosomes.

However, in some cases, the chromosomes do not separate accurately. Rather than having two copies of chromosome 21, the newborn ends up with three copies or an additional partial copy. This additional chromosome causes major problems as the baby starts developing its brain and physical traits. Simply put, the improper separation of chromosomes causes Down syndrome in newborns. 

Symptoms of Down Syndrome

Usually, expecting mothers won't experience any visible symptoms of having a child with Down syndrome. However, newborns with the medical condition typically show a few distinguishing symptoms at birth. This includes:

  • Short neck 
  • Poor muscle tone 
  • Small ears or head
  • Bulging tongue 
  • Flat facial features 
  • Atypical shaped ears
  • Eyes slanting upwards 

Although newborns with Down syndrome may have an  unusual birth weight, their development is generally slower than that of a normal child. With time, the child might show some signs of: 

  • Poor judgement 
  • Slow learning capabilities 
  • Impulsive behaviour 
  • Short attention span

Besides this, there are several medical conditions that come along with Down syndrome. With time, the child may show signs of:

  • Leukaemia 
  • Obesity 
  • Congenital heart defects 
  • Dislocations in the hip region 
  • Hypothyroidism 
  • Dementia 
  • Alzheimer’s (later in life)

Down Syndrome Diagnosis 

The diagnosis of Down syndrome involves certain screening and diagnostic tests for all pregnant women, irrespective of age. The odds or chances that a mother is carrying a child with Down syndrome can be determined via screening test. This includes blood tests and Nuchal translucency tests. However, these tests are not always 100% effective. 

On the other hand, diagnostic tests can determine if your child has Down syndrome. These tests take place during pregnancy. It includes Chorionic villus sampling (CVS), Amniocentesis, and Preimplantation genetic diagnosis. Your doctor can help you with the different types of tests, advantages and downsides, and the interpretation of your data. If required, your healthcare provider might also suggest you speak to a genetics counsellor based on the observation. 

India’s Battle with Down Syndrome

Like any other developing nation, India continues to face challenges in supporting individuals with developmental disorders with prompt medical attention and education, particularly those belonging to the low-income sector of society.

Studies claim that around 30,000 to 35,000 newborns in India have Down syndrome2. However, the major battle involves a lack of education and awareness. Many adults and children with this genetic disorder experience severe social marginalisation because society is unaware of their needs. 

However, with such an initiative in place, it is anticipated that more and more people will come to know about such  medical conditions. The World Down Syndrome Day 2024 theme was "End the Stereotypes''. It aimed to raise awareness about the challenges faced by special people due to prejudices and misconceptions. 

Down Syndrome and Health Insurance

In addition to love and care, raising a child with Down syndrome often comes with hefty financial challenges. Medical costs associated with Down syndrome are quite substantial. The costs mount up for everything, right from specialised treatments to routine check-ups. With time, these expenses can put a heavy burden on a family's finances, especially if they don't have insurance.

Better yet, a child who shows Down syndrome symptoms can greatly benefit from early intervention. Receiving therapies at an early age can greatly improve their growth and quality of life. Furthermore, consistent care, including regular medical visits, consultations, and therapies, is equally important. It guarantees that the child develops in a nurturing atmosphere. 

In situations like these, appropriate health insurance becomes essential. It relieves the financial load and guarantees that the child gets the best care available without any monetary obstacles. Families can concentrate more on raising their children and less on the intimidating medical costs. Health insurers these days have introduced many policies with advanced features. One such policy is Care Joy Maternity Insurance that guarantees excellent access to medical coverage for newborn babies with birth defects.  Under Care Joy Tomorrow, the parents can ensure quality treatment for their newborn child with Down syndrome. Under this policy, the specified payout will be disbursed as a lump sum. 

Let’s Face their Challenges Together!

Initiatives like World Down Syndrome Day create a safe space for people who face major challenges in society due to their physical attributes. It is our responsibility to be aware, make them prepare to face the challenges and help to lead a normal life. In addition, for a child with Down syndrome in India, health insurance is a lifeline that guarantees the finest care available. Investing in maternity health insurance, like Care Joy, ensures that you protect your savings besides catering to your child's healthcare needs. It is important to understand that your child is entitled to excellent medical care and deserves an opportunity to flourish. 

>> Also Read: What are the diseases not covered under health insurance?

Disclaimers: All plan features, benefits, coverage, and claims underwriting are subject to policy terms and conditions. Kindly refer to the brochure, sales prospectus, and policy documents carefully.

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