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Blog #158~Down Syndrome Awareness Month

Blog #158~Down Syndrome Awareness Month

Down syndrome awareness month

October is Down Syndrome Awareness Month.   This month, I want to share some information and educate the public about Down syndrome.

Facts about Down syndrome

Courtesy of The National Down Syndrome Society (NDSS)

*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.
*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
*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.
*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. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
*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 and 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.

Down syndrome journey

Since this is about awareness, it is important to educate people on the appropriate language that should be used. People with Down syndrome should always be referred to as people first.

Do NOT say:

*”A Down syndrome baby or child.”

*”Down’s baby or child”

*”Down’s”

*”He has Downs”

Instead say: “A child with Down syndrome”.  Finally it should be said “Down” and NOT Down’s.” Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.  Global Down Syndrome.org mentions that,  “Originally, it was referred to as his syndrome – Down’s Syndrome.  In the UK, Europe and many other countries, the correct term still remains “Down’s Syndrome.” In the U.S., it was changed to Down syndrome (drop the possessive) as to emphasize that it was not Dr. Down who had the syndrome nor was it his”.

My son Nick is 22 years old, and has Down syndrome and autism.  I’ve heard all of these incorrect phrases over the years. Please help me educate the public on the proper way to refer to a person with Down syndrome.  Thank you for reading and spreading awareness about Down syndrome.  That’s what is in my noggin this week.

~Teresa 

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Author:

Teresa is the mother of two boys. Her youngest son, Nick is 23 years old and has special needs including Down syndrome, autism and verbal apraxia. She is a parent advocate, speaker and writer who is currently working on the memoir of raising her son, Nick. You can follow Nick world on our Facebook page and Pinterest @Down Syndrome With A Slice of Autism. Find Nick on Instagram@ #nickdsaustism, Twitter @tjunnerstall.

4 thoughts on “Blog #158~Down Syndrome Awareness Month

  1. Hi Teresa!
    Thank you for your comments. I love the point you made about putting “the person” first, before the syndrome! I wondered about the other point you made about the spelling of Down’s/Down. Since my sister was born 44 years ago with Down’s syndrome, I’ve noticed a shift away from the apostrophe among people in the community.
    I always thought that it would retain the apostrophe, since as you mentioned, it was named for the doctor who characterized the symptoms and syndrome. Kind of like Alois Alzheimer, who first recognized the symptoms and syndrome that now bears his name, Alzheimer’s Disease.
    Also like Hodgkin’s Lymphoma, who is named for the physician who, in 1832, first described the symptoms of the cancer that bears his name. Are you saying that Down’s Syndrome is different than these other conditions? Thanks for the opportunity to ask this. It is something that I have noticed over the past 20 years, and it has always confused me.

    1. Thank you for bringing up that good point, Sallie. 🙂 I will add in this to the blog for clarification: “Down syndrome is named after a doctor in the UK named John Langdon Down. Originally, it was referred to as his syndrome – Down’s Syndrome. In the UK, Europe and many other countries, the correct term still remains “Down’s Syndrome.” In the U.S., it was changed to Down syndrome (drop the possessive) as to emphasize that it was not Dr. Down who had the syndrome nor was it his.” Appreciate your feedback and following the blog! 🙂

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