World Down Syndrome Day: Finding My Voice in My Community

Web page - March 21 is World Down Syndrome Day, 3/21 in recognition of Trisomy 21

March 21 is World Down Syndrome Day, 3/21 in recognition of Trisomy 21.

March 21. That’s Three twenty-one. These numbers are symbolic of the medical name for Down syndrome: trisomy 21. In humans, each cell normally has 23 pairs of chromosomes, which contain the person’s genetic makeup. In people with Down syndrome, the 21st chromosome has three rather than the usual two copies. The condition of there being three copies is known as trisomy; Down syndrome is the most common trisomy condition (please see our earlier blog post on Trisomy Awareness Month). Such seemingly tiny genetic variations can have a tremendous impact on a person. A prime example is the 23rd chromosome: females have two copies of the X chromosome and males have one X and one Y.

The theme for World Down Syndrome Day this year is #MyVoiceMyCommunity, “enabling people with Down syndrome to speak up, be heard, and influence government policy and action, to be fully included in the community.” In addition, Down Syndrome International will hold a conference on March 21 at the United Nations World Headquarters, New York. The conference and campaign will address four questions:

  • Why it is important for people with Down syndrome and their advocates to speak up and influence policy makers at all levels?
  • What key policies affect the lives of people with Down syndrome? How can these policies ensure full inclusion in society?
  • How can advocates become involved?
  • How can we empower people with Down syndrome, along with those supporting them, to advocate for themselves?

These are important questions we should ask of ourselves in serving our consumers with Down syndrome.

For those interested in following the World Down Syndrome Day Conference at the U.N., the event is being streamed. Information on the speakers, along with important background knowledge, is available on March 21.

Some portraits in Down syndrome

Book Lucky Few - A mom finds joy in adopting a daughter with Down syndrome

Heather Avis is a mom who, with her husband, adopted a little girl with Down Syndrome. In this book, released on WDSD, she tells of the joy she has found.

 

 

 

 

 

 

A German man with Down syndrome who survived the Holocaust is independentWalter, now 63, survived the Nazi genocide against persons with disabilities. Instead, he has found dignity in his independence in the community.

ZEIT Magazine, Nr. 37, 6. September 1996

 

 

 

Screen shot of photo essay documenting the beauty of Down syndrome

The Huffington Post recently featured a photographer who compiled a photo essay depicting the beauty of children with Down syndrome.

 

 

 

 

Charles de Gaulle adores his daughter, Anne with Down syndrome

Former Prime Minister took the time to enjoy a precious moment with his daughter, Anne, who had Down syndrome.

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Trisomy: About That Extra Chromosome March Is Trisomy Awareness Month

Most of us are born with 23 pairs of chromosomes, for a total of 46. These chromosomes include DNA and other genetic building blocks. Some people, however, are born with a trisomy condition, that is, an extra chromosome. Trisomy can lead to a variety of problems, including physical and intellectual and developmental disabilities. March is Trisomy Awareness Month: the three most common trisomy conditions are as follows:

  • Trisomy 21. Most of us know this condition as Down syndrome, named after the
    down_syndrome_karyotype

    Karyotype for trisomy Down syndrome: Notice the three copies of chromosome 21. Courtesy: National Human Genome Research Institute – Human Genome Project

    British physician John, along with the familiar physical characteristics and facial features. Children with Down syndrome are at increased risk of cardiac (heart), endocrine (thyroid), gastrointestinal (digestive), auditory (hearing), and periodontal (gum) conditions. Many people who work among individuals with Down syndrome note their general happiness and positive outlook on life. However, these people may experience depression and anxiety in early adulthood and develop Alzheimer’s later in life.

  • Trisomy 18. Also known as Edwards syndrome, this is the second most common trisomy condition. Children born with Trisomy have severe intellectual disabilities that accompany microcephaly, an unusually small head (along with a small lower jaw). Many other internal and external physical anomalies are present as well. Half of infants die before their first week, and only 1 percent survive beyond their first year.
  • Trisomy 13. At times referred to as Patau syndrome, children with trisomy 13 have severe intellectual disabilities. As with trisomy 18, most infants born with trisomy have severe medical conditions and die very early in life and only 5 to 10 percent live beyond their first year.

Though trisomies 13, 18, and 21 are the most common, trisomy can occur with any chromosome. Most of those genetic anomalies, however, are not viable and result in miscarriage.

 

Also Worth Knowing

The risk of having a baby with a trisomy condition increases with the age of the mother, especially after her early 30s.

Statistically, the incidence of trisomy 21 (Down syndrome) is about 1 in 1,000 live births; for trisomy 18, this is about 1 in 5,000 live births, and for trisomy 13, about 1 in 10,000 to 21,700 live births (the median figure being 1 in 16,000 live births).

However, there are no precise figures on how common Down syndrome and other trisomy conditions are, as some parents elect not to carry a fetus that has been diagnosed as such to term. Such abortions are naturally a highly emotional issue, with strong viewpoints even within each of the Pro Choice, Pro Life, and disability advocacy communities.

World Down Syndrome Day Is Here!

March 21.  Spring is finally here.  It’s the vernal equinox; days are now longer than nights.  And Saturday, March 21, is World Down Syndrome Day.  This special day is to raise awareness and highlight the many positive qualities of people with Down syndrome, as well as to increase public understanding and civil discourse.  This year will mark the 10th annual World Down Syndrome Day, the fourth since was recognized by the U.N., in 2011.  Across the world, people with Down syndrome, their families, friends, teachers, co-workers, and supporters will be observing this special day.  March 21 is symbolic: as the 21st day of the third month, it represents the third copy of the 21st chromosome that characterizes Down syndrome.

World Down Syndrome Day 2015

     The theme of this year’s event, according to Down Syndrome International (DSI), is “My Opportunities, My Choices.  Enjoying Full and Equal Rights and the Role of Families.”   According to DSI, “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.”

The official statement of NDSS is, “We are able to do things that other people can and can’t do – just like anybody around the world.”

In the U.S., the National Down Syndrome Society (NDSS) provides a wealth of information via its Web site and social media.

  • First, here are the facts:
  • With facts in hand, it’s time to dispel myths and misconceptions of Down syndrome   For example, Down syndrome is not a rare disability. It is not hereditary. It is not more common among older parents.  People with Down syndrome do not have short lives.  Children and adults with Down syndrome do not have severe cognitive delays (and we must never use the R-word).
  • People with Down syndrome can share their Great Story online to inspire and inform others.
  • NDSS is seeking 21 people with that extra copy of the 21st chromosome to join Team NDSS21 in a fundraising spectacular.

If you are in New York City, be sure to check out the landmark Empire State Building, which will be illuminated in green, as part of an effort among several Down syndrome advocacy groups promoting “Random Acts of Kindness.”

Adds NDSS Ambassador, actor Chris Burke, “No matter who we are or where we live, give us a chance to do something with our lives so we can look forward to the future.”