Understanding Down Syndrome

Down syndrome is the most common and readily identifiable chromosomal condition associated with intellectual disability. Down syndrome is caused by a chromosomal abnormality, occurring when an individual has three, rather than two, copies of the 21st chromosome. The extra chromosome changes the orderly development of the body and brain, causing increased risk for certain medical conditions.

The exact causes of the chromosomal rearrangement and primary prevention of Down syndrome are currently unknown. Down syndrome is not related to race, nationality, religion, or socioeconomic status.  Children born with Down syndrome experience a wide variation in mental abilities, behavior, and physical development. Individuals with Down syndrome have their own unique personality, capabilities, and talents. They benefit from early intervention, inclusive education, appropriate medical care, and positive public attitudes.

Fact Sheets and Frequently Asked Questions

• A page outlining the “Myths and Truths” often associated with Down Syndrome has been created by the National Down Syndrome Society.
• The National Down Syndrome Congress’ website en Español offers information about Down syndrome in Spanish.
• The National Down Syndrome Society offers a fact sheet about Down syndrome. 

Other Resources

• The March of Dimes strives to help women have full-term pregnancies and is dedicated to researching problems that threaten the overall health and well being of babies.
• The National Down Syndrome Society has created A Preferred Language Guide, which outlines language that is considered to be most appropriate when referring to Down syndrome or individuals with Down syndrome. 
• NC Health Info is an online guide to websites of quality health and medical information and local services throughout North Carolina and also en espanol.
• The Arc of North Carolina provides direct supports and services statewide to people with intellectual and developmental disabilities (I/DD) that enable people to lead full rich lives in the community. Additionally, many local chapters also provide supports and services.

Advocacy and Social Connections

• To connect with other parents and families who have a child with Down syndrome, contact the Family Support Network™ of North Carolina.

• GiGi’s Playhouse Down Syndrome Achievement Centers offer free therapeutic, social and occupational programs for individuals with Down syndrome across the lifespan.

• Located in Central North Carolina, the Triangle Down Syndrome Network exists to support and connect families with children with Down syndrome by organizing and promoting activities.

• The Down Syndrome Association of Charlotte strives to enhance the quality of life for all individuals with Down syndrome by providing information and support to families, professionals, and the community through educational and social activities.
• The Western Carolina Down Syndrome Alliance is working to help create a community that will be educated, supportive, and inclusive of individuals with Down syndrome.
• Located in Winston-Salem, North Carolina, the Down Syndrome Association of Greater Winston Salem is an advocacy organization that serves to enhance lives of individuals with Down syndrome and to provide information and support to families and professionals.
• Visit the My Great Story page on the website for the National Down Syndrome Society to read and/or share stories about and by those touched by Down syndrome.