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Adults with Down Syndrome

When I was born, I had an extra copy of chromosome 21 in all the cells of my body. I was one among 700 to 800 infants affected with this genetic disorder, which changed my body’s and brain’s normal development, causing me mental and physical problems. Based on my physical characteristics, and a chromosome study, I was diagnosed with Down syndrome.

In spite of health complications as a child, I attended school alongside therapies, and grew up to be an individual who wanted to live my life to the fullest.

Facts about Down Syndrome

In most of the cases, Down Syndrome results due to an error in cell division of the reproductive cells, either the sperm or ovum. When the sperm and egg unite, an embryo forms with an additional third chromosome, in this case chromosome number 21. Hence, this syndrome is also known as Trisomy 21.

Down Syndrome is the most frequently occurring chromosomal disorder, and not related to any race, nationality or socio-economic status.

It is still not known, exactly why this happens or ways to prevent this, but it is a random event that occurs, and is not due to any behavioral activity of the parents or any environmental factors.

There is evidence that this abnormality in a reproductive cell increases with the age of a woman. Hence, an older mother is more likely to have a baby with Down Syndrome. Specialists recommend that women aged over 35 years undergo prenatal (before birth) tests for this disorder.

While there are no sure ways to prevent Down Syndrome, mothers can take precaution to have a healthy pregnancy, which includes taking vitamin supplements and avoid smoking or drinking while pregnant.

Growing with Down Syndrome

Though babies affected with Down Syndrome have physical and learning disabilities, many of them live happy and productive lives, leading well into adulthood.

Physical problems associated include:

  • Birth defect of the heart
  • Stomach problems
  • Intestinal problems
  • Issues with memory
  • Lack of concentration
  • Lack of judgment
  • Hearing problems
  • Seeing problems
  • Thyroid issues
  • Skeletal issues

Generally, the IQ of a person with Down Syndrome will be in the mild to moderate range. There can be delayed language development and difficulties with physical coordination.

Caring for the individual

It is important that people with Down Syndrome have an encouraging environment at home, with regular health check ups and emotional support from their families. Since, they are prone to heart problems, respiratory, vision and hearing problems, arthritis, thyroid issues, medical check ups are important to detect and prevent. With the help of family members and caretakers, many adults are living fuller lives, settling down and getting married. They can develop skills to work and live independently to some extent.

Family members of an adult with Down syndrome should understand the behavior that is typical or in the normal range. Some appear to have imaginary friends and self talk. Some adults tend to be repetitive and orderly in day-to-day activities. Reaction to grief can also be delayed or shown in a different way. Behavioral changes are also seen at times to communicate any physical or psychological botheration. At such times, medical intervention will help to assess the condition.

Other areas to be encouraged are regular exercising to maintain an ideal body weight along with recreational activities for enjoyment. A healthy diet is important as obesity is commonly seen. Adults with Down syndrome need to feel a sense of accomplishment, and so judging the kind of job/skill that the person would get satisfaction from will be very helpful. It is also recommended that annual immunization be carried out to avoid serious health problems. Adequate calcium intake is essential (by diet or supplement) to prevent osteoporosis.

The Alzheimer connection

Today, the life expectancy of a person with Down syndrome has increased to 50 years and beyond, compared to a very low life span in the early years. With an increase in life span, adults are receiving greater attention by their families and well wishers. However, premature aging of about 20 to 30 years ahead of people in a general population is seen in Down syndrome. Hence, symptoms of Alzeihmer’s-like dementia (a progressive degenerative brain disorder) are becoming common in adults with Down syndrome aged over 35 years. The reason behind this might be due to the extra ‘gene dosage’ as a result of the abnormal third chromosome in Down Syndrome. Symptoms in such cases include memory loss and personality changes. However, it should not be taken for granted that all individuals with Down syndrome will develop Alzheimer’s disease.

Light at the end of the tunnel

I believe that every person living with Down syndrome is unique and
needs to be accepted by the society. There is no reason to segregate or institutionalize individuals because the very society comprising of loved ones, professionals, doctors, therapists and teachers will be a pillar of strength and support so that people with Down Syndrome can live fulfilling lives.

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