Moving Up with Down
Down Syndrome (DS), also referred to as Trisomy 21, is one of the most common genetic disorders in the world. We have come a long way from calling a person with DS as Idiot or Mongoloid and having a forced sterilization of individuals with DS and public policy of a program of systematic involuntary euthanization. However, a lot more is desired, especially in India, when it comes to providing proper healthcare, and making our society more inclusive for people with DS. In India, the annual birth of DS babies is around 37,000 which means the incidence of DS is around 1.4 per 1000 live birth. March 21st is a World Down Syndrome Day. Let’s spread awareness and provide opportunities for everyone to live at their optimal.
What is DS?
If you have been reading our blog you would already know that cell is a basic unit of all life on earth including humans. Inside each cell, there is a nucleus where genetic material is stored in genes. Genes have information responsible for our inherited phenotypic trait, or simply trait. In humans, most genes are arranged on chromosomes. Typically, a nucleus contains 23 pairs of chromosomes, half inherited from each parent. People with Down Syndrome have all or part of the third copy of chromosome 21 present in all or some of their cells.
Signs and symptoms:
DS almost always results in physical and neurological disabilities and changes the course of development.
DS can cause:
- Physical characteristics such as a flattened face, small chin, slanted eyes.
- Low muscle tone or loose joints.
- Lower IQ when compared to same age group.
- Hearing and vision disorders.
- Reduced motor skills.
- Increase in the risk of other health conditions such as congenital heart defect, epilepsy, leukemia, thyroid diseases.
Maternal age has been thought as an important factor for DS occurrence that is, the chance of having a baby with DS increases with the mother’s age. Down Syndrome birth is attributable to multiple maternal risk factors that include both genetic and environmental challenges such as chewing tobacco, however, more research is required to understand the complicated interactions among these factors. Its occurrence has nothing to do with race, nationality, socioeconomic status or religion.
DS and Physical Activity (PA)
Children with DS tend to become obese in their childhood. It could be because of lack of motivation, expectation, knowledge or opportunities to perform physical activities. This further deteriorates their low muscle tone and loose joints condition which leads to even less PA. They should be encouraged to take part in an exercise program that includes strength training and movement. Strength training to make muscles stronger over time and movement-based exercises to improve motor skills and cardiovascular performance. Family and society at large play a key role as either a facilitator or a barrier when it comes to participation of children with DS in PA. There is evidence that PA can provide physical and psychological benefits such as becoming more independent. It’s upon us to do a better job at making it available to children with DS.
How can you help?
By spreading awareness. A lot more research is required to fully understand DS and find a cure. Proper education is extremely crucial for children and young adults with DS to achieve their true potential and become a productive member of the society. It starts with understanding each student’s physical, emotional, and learning needs as each student is different. Education and PA can help to improve communication skills including speech and language there by support effective inclusion. If you have hiring responsibilities or can influence hiring, then find more about various operations in your organizations that can be performed by people with DS. There are numbers of jobs that they can do as well as anyone and there are definite advantages of hiring them. As per one McKinsey report - “the companies that employ them (people with DS) often report significant improvements in their organizational health (an organization’s ability to align, execute, and renew itself faster than competitors so that it can sustain exceptional performance over time)”.
We can bring out a change in the lives of people with DS and empower them to live a better and more meaningful life by “us”, as educators, employers, government and wider community, coming together.
Please note - this blog is not intended to be used as medical advice. The sole purpose is to create awareness. Please consult with your doctor or qualified healthcare professional for any medical advice. If you notice any wrong information in the blog, please email us at firstname.lastname@example.org. We’ll be happy to correct.
- World Down Syndrome Day - https://worlddownsyndromeday.org/
- Down Syndrome - https://www.ndss.org/about-down-syndrome/down-syndrome/
- Facts about Down Syndrome - https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
- Facts and FAQ About Down Syndrome - https://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/
- Down Syndrome Org - https://www.down-syndrome.org/en-us/
- Genes and human disease - http://www.who.int/genomics/public/geneticdiseases/en/index1.html
- Down syndrome - https://en.wikipedia.org/wiki/Down_syndrome
- Incidence of down syndrome: Hypotheses and reality - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3276977/
- Birth defects in India: Hidden truth, need for urgent attention - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3758715/
- Down Syndrome in India - http://global-disease-burden.healthgrove.com/l/80073/Down-Syndrome-in-India
- The benefits of exercise to a Down’s Syndrome population - http://www.intellectualdisability.info/physical-health/articles/the-benefits-of-exercise-to-a-downs-syndrome-population
- The struggle to find work when you have Down's syndrome - http://www.bbc.com/news/blogs-ouch-32613957
- The value that employees with Down syndrome can add to organizations -
- For Families and Carers : Education - https://www.downs-syndrome.org.uk/for-families-and-carers/education/