We Decide
The world woke up to the exciting news of NASA’s InSight Mars Lander revealing stunningly clear pictures of the Red Planet. The excitement is about the demonstration of human capability to conquer the far away planets to have a better understanding. There are many such excitements and achievements. Closer to the earth and humanity are situations like Alzheimer’s, Parkinson’s. Neither the reason for their onset is known, nor a cure is available. Down Syndrome is one such challenge humanity is forced to live with. Though advances in the medical domain made it possible to identify if it exists in embryo’s, the reason why it is happening is not known. It looks like it is a lapse of concentration of the creator or deviation in the creation process that such things happen.
Down Syndrome is not an illness, and it is a genetic condition (or Syndrome).
Down Syndrome is the most prevalent chromosomal disorders in human beings. A genetic abnormality occurs when extra genetic material from chromosome-21 gets transferred to an embryo that is newly forming. Those additional genes result in changes to the developing embryo, resulting in physical and mental abnormalities. It was not classified as a mental disability until Physician John Langdon Down published his scholarly work in 1866, describing this condition, which came to be recognised as Down Syndrome. The extra chromosome content can arise in several different ways. The most common being a complete extra copy of chromosome 21, resulting in trisomy 21. Mosaic Down Syndrome arising due to some of the cells in the body are normal, and others have trisomy 21. When there is additional material from chromosome 21, it is referred to as translocation. Whichever form it is, it is a deviation resulting in the child born with such aberration to grow and live in a different condition.
In 2007, the WHO declared March 21 to be observed as World Down Syndrome Day. The UN-endorsed it in 2011, and since 2012, World Down Syndrome Day is being observed. The observance aims at raising awareness and supporting those living with Down Syndrome. Why was March 21 was chosen? This day was chosen because Down Syndrome occurs when there is a full or partial extra copy of chromosome 21. So, three copies of chromosome 21 translate to 3/21, or March 21. Is it Down Syndrome or Down’s Syndrome? Physician John Langdon Down was first to describe the mental condition, and he did not have it, and hence it is and should be called Down Syndrome. Due to his perception that children with Down Syndrome shared facial similarities with those of the Mongolian race, they referred to as “mongoloid”. As it is misleading and causing embarrassment to Mongolia, it is no longer in common use.
Down Syndrome can cause lifelong disabilities and may even shorten the person’s lifespan. It occurs in about 1 in 1,000 babies born each year. Maternal age is linked to an increased chance of giving birth to a baby with Down Syndrome. It is 35 years of age, it has 1 in 350 chances of giving birth to a child with Down Syndrome, and it stands at 1 in 100 by the time a woman is 40 years of age. It is a caution to the young women aspiring for motherhood and postponing due to their commitment to the careers.
India has the highest number of people who have Down Syndrome in the world. 23,000 to 29,000 children are born with Down Syndrome in India every year. The numbers are alarming and frightening as fatalities are high due to negligence, lack of awareness, and medical facilities access. People like Ashritha (identified with Down Syndrome), who lives in Mumbai, are lucky. She says, “My family and people around me are always supportive and guiding in all my dreams and aspirations”. Ashritha helps adults with developmental and intellectual disabilities work and live a meaningful life of dignity and worth. We need to listen to more such stories.
Advances in medical sciences lead to effective screening methods during the early stages of pregnancy. About 92% of pregnancies in Europe with a diagnosis of Down Syndrome are terminated. As a result, there is almost no one with Down Syndrome in counties like Iceland and Denmark. There are always ethical issues connected. Should the screening be permitted or not? It is argued that not offering to screen for Down Syndrome is unethical. It should be the mother’s choice, whether to get screened or not.
Philosophically speaking, Down Syndrome is an equaliser, as it does not discriminate, affects people across the world, is not specific to any community, or any reason for the Syndrome’s onset is known. Variation in the life spans of people with Down Syndrome is seen, depending upon where they live. Efforts are underway to determine how the extra chromosome 21 material causes Down Syndrome. To develop treatments and improve intelligence in those with the Syndrome, the use of stem cells and gene therapy are being attempted.
As there is no cure for Down Syndrome, education and proper care have been shown to improve quality of life. As a society, we need to increasingly work towards bringing awareness to accept Down Syndrome and diseases that come with this condition.
People have abilities of different nature and to a different extent.
Down Syndrome is to be taken as one such condition.
We need to look at their abilities and possibilities.
Toons: Anusha and Reema Jaiswal
Logs: Sai Baba
