KNOWLEDGE is power...

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What is Down syndrome?

Down syndrome is the common name for Trisomy 21 or the triplication of the 21st chromosome.  It is a genetic condition that appears in one of every 691 live births. It is the most common chromosomal anomaly. Individuals with Down syndrome have 47 chromosomes instead of the typical 46. 

Every cell in the human body has a nucleus that stores genetic material in its genes. Genes carry the codes responsible for all of our inherited traits. 

Typically, each cell's nucleus contains 23 pairs of chromosomes  (46 in total), half inherited from each parent.  The genes store the genetic information along rod-like structures called chromosomes. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.  That is why you hear T21 or Trisomy 21 when people are referring to Down syndrome.

The cell division that causes Down syndrome happens immediately at conception, regardless of race, nationality, religion, or socioeconomic status. 

We often tell families that we wish the doctor who discovered Down syndrome was named Dr. Up, or Dr. Einstein.  In the late nineteenth century John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. This scholarly work, published in 1866, earned Down the recognition as the "father" of the syndrome.

Although other people had previously recognized the syndrome's characteristics, it was John Langdon Down, who described the condition as a distinct and separate entity, thus the common name for this medical condition is Down syndrome.  

You can learn more about Dr. John Langdon Down here .

 Use this “people first’ language when referring to Down syndrome and people who have Down syndrome:

• People with Down syndrome should always be referred to as people first.
• Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
• Down syndrome is a condition or a syndrome, not a disease.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• “Typically developing” or “typical” is preferred over “normal.”
• "Unique abilities", “Intellectual disability”, or “cognitive disability” has replaced “mental retardation” as the appropriate term.
• We strongly condemn the use of the word “retarded” in any  context. Using this word is hurtful and suggests that people with unique abilities are not competent.

Down vs. Down’s

• NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome.
• Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. An “apostrophe s” connotes ownership or possession.
• While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. The AP Stylebook recommends using “Down syndrome,” as well.

Our members are community advocates, business owners, models, cheerleaders, alter servers, artists, athletes and so much more!  Don't let the extra chromosome fool you into thinking their life will be any less fulfilling or rewarding.  That is NOT true!  Our members are determined and successful!  One of our members just became the first athlete with Down syndrome to complete the Ironman, a feat most people with 46 chromosomes will never accomplish.  

Our members with Down syndrome do so many incredible things!  One is a Zumba instructor, several young adults drive independently, others go to college, many are employed and some live on their own (with some assistance).  Every year we see new dreams come to fruition.  Our members are brothers, sisters, boyfriends and girlfriends, they are grandchildren and aunts and uncles and they participate in so many activities,  

We strie to open doors of OPPORTUNITY so that our members can live SUCCESSFUL lives.  We tell our families to DREAM BIG - and guess what?  They do!  What will your loved one's life look like?  We don't know, however, we are certain you will be surprised at all they CAN do!