World Down Syndrome Day - 2013

By Terry Orr

World Down Syndrome Day (WDSD) is observed on 21 March. On this day, people with Down Syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome.

21 March 2013 marks the 8th anniversary of World Down Syndrome Day, a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do.

What is Down Syndrome?

In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all. [Source: ndss] 

Down Syndrome Fact Sheet ( http://www.ndss.org/PageFiles/1474/NDSS%20Down%20Syndrome%20Fact%20Sheet%20English.ppt%20%5bCompatibility%20Mode%5d.pdf ) provides an excellent overview. Below are a few facts from this fact sheet:

• Down syndrome is the most commonly occurring chromosomal condition; one in every 691 babies in the United States is born with Down syndrome.
• Down syndrome occurs in people of all races and economic levels.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to realize their life aspirations and lead fulfilling lives.

For those interested in learning more about Down Syndrome, I recommend starting with wikipedia link below, as it provides an excellent starting point.

References and Links:

http://en.wikipedia.org/wiki/Down_syndrome 

http://www.ndss.org/Down-Syndrome/ 

http://www.worlddownsyndromeday.org 

(All images from Google) 

National Down Syndrome Awareness Month

(Google Image) 

Nurse Diane

One in every 691 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition.  Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

The following are some facts about Down Syndrome found on the website www.ndss.com:

• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome occurs in people of all races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
• People with Down syndrome attend school, work; participate in decisions that affect them, and contribute to society in many wonderful ways.
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

National Down Syndrome Society (NDSS) has been at the forefront of Down syndrome research. Through a variety of research programs and activities, now focusing on advocacy for Down syndrome research on the federal level, NDSS has played a major role in advancing knowledge about Down syndrome in an effort to ensure that people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.  October is National Down Syndrome Awareness Month.  

To learn how you can help with research and advocacy, visit their website at http://www.ndss.org/

Downs Syndrome Awareness Month

By Diane Forrest, RN

A while back I saw a movie called The Ringer.  It was a story about a guy who had a large debt to pay, and decided to enter a contest for the prize money.  The contest was the Special Olympics, so he had to pretend to be mentally challenged. Many of the stars in this comedy had a condition called Down's syndrome.

Down's syndrome is a genetic condition where a person is born with 47 chromosomes instead of the usually 46.  Down syndrome is the most common single cause of human birth defects.  Down syndrome is the most common single cause of human birth defects.  There has been a spotlight placed on Down Syndrome recently with the campaign of Sarah Palin.  Her young son, Trig, has this disease.  Since this is National Down Syndrome Awareness Month, I would like to share some facts with you.

Symptoms:

• Excess skin at the nape of the neck;
• Flattened nose;
• Separated joints between the bones of the skull (sutures);
• Single crease in the palm of the hand;
• Small ears;
• Small mouth;
• Upward slanting eyes; and or
• Wide, short hands with short fingers.

Children may also have delayed mental and social development.  As children with Down syndrome grow and become aware of their limitations, they may also feel frustration and anger
.

Children born with Down's syndrome can be diagnosed immediately upon appearance; however blood tests can be done to verify the number of chromosomes.  There is no treatment, however family support and education is extremely important.  

Complications

• Airway blockage during sleep;
• Compression injury of the spinal cord;
• Endocarditis;
• Eye problems;
• Frequent ear infections and increased risk of other infections;
• Hearing loss;
• Heart problems;
• Gastrointestinal blockage; and or
• Weakness of the back bones at the top of the neck.

For ways you can help click on this site:  http://www.ndss.org/