“People with Down syndrome are unique individuals with many strengths and talents. Everyone has dreams. Including people with Down syndrome. I dream that one day I will drive a car, have an exercise video, and work on my work, take the challenge, take the risk.”
- Leann Peterson, Dreams
What is Down Syndrome?
Down Syndrome is the most common chromosomal condition, occurring when an individual is born with three copies of the 21st chromosome. It is a syndrome, and not a disease.
Physically, Down syndrome often is characterized by low muscle tone, a single deep crease across the palm, small stature and an upward slant to the eyes, though individuals may have any combination of these.
While all those with Down syndrome will experience some cognitive delays, the effect is usually only mild to moderate.
Facts About Down Syndrome:
- 1 in every 691 babies is born with Down syndrome.
- Down syndrome occurs in people of all races and economic levels.
- There are more than 400,000 people with Down syndrome in the US alone.
- Though 80% of children with Down syndrome are born to women under 35 due to higher fertility rates, the incidence rate of Down syndrome in babies increases with the age of the mother.
- Down syndrome makes one at increased risk for congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. This used to mean a low life expectancy, but with antibiotics and good healthcare, average life expectancy is approaching the national standard.
- With good education, a supportive home environment, and healthcare, most people with Down syndrome grow up to lead productive, active lives.
Facts About Conception and Pregnancy in Relation to Down Syndrome:
- While it is not known what causes Down syndrome, there is no evidence to support the idea that any action of the parent during or prior to the pregnancy causes the disorder. Down syndrome is never the fault of the parent/s.
- If a woman has had one child with Trisomy 21, the risk of having another child with Trisomy 21 increases by 1%.
- Genetic counseling prior to conception reveals more exact probabilities of having a child with Down syndrome, as well as many other genetic disorders.
Types of Down Syndrome:
- There are three types of Down syndrome: Trisomy 21, mosaicism and translocation.
- Trisomy 21 is the most common type of Down syndrome, accounting for 95% of all occurrences. A cell division error called 'nondisjunction' occurs, where the 21st chromosome fails to separate prior to (in the sperm or egg) or during conception. This is then replicated in every cell of the body during development of the embryo.
- Mosaicism accounts for 1% of Down syndrome cases, and occurs when nondisjunction happens in some but not all instances of the 21st chromosome, creating a mix or 'mosaic' of cells with extra and standard amounts of chromosomes. There is some research to indicate that this is a milder form of Down syndrome, but broad comparisons are impossible.
- Translocation occurs in 4% of Down syndrome cases. In these cases, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.
It doesn't particularly matter which type of Down syndrome an individual may have; the expression of the extra genetic material will be unique to that person. S/he will have their own personality, temperament, likes, dislikes, talents and strengths. A person with Down Syndrome is just that: a person. Down syndrome is merely a part of them.
Related Resource Pages On Band Back Together
National Down Syndrome Society (NDSS) (US) - Helpline - 1.800.221.4602 Monday through Friday, 9am - 5pm EST in 150 Languages. The NDSS is a national non-profit organization in the United States that advocates for the value, acceptance, and inclusion of those with Down syndrome in all areas of life. It provides information about Down syndrome and support to individuals, families, educators, and the public. It has a list of more than 350 local affiliates that provide services to individuals with Down syndrome and their communities. Its comprehensive website covers everything from helping new parents cope to helping teenagers with Down syndrome make the transition from high school to adulthood.
The Canadian Down Syndrome Society(CDSS) (Canada) - Toll-free information line: 1-800-883-5608. The CDSS is a national non-profit organization providing information, advocacy and education about Down syndrome. The CDSS supports self-advocates, parents and families through all stages of life. The organization provides a wealth of information for new parents, including a Parents Helping Parents: New Parents Visiting Program. It also provides links to local resources in each of the provinces.
My Child Without Limits: An early intervention resource for families of young children ages 0-5 with developmental delays or disabilities, and for the professionals who work with them.