Quick Reference Fact Sheet for Down’s Syndrome

Down Syndrome Facts groupings this page: General, Medical, Cognitive/Intellectual, Social and Societal, and Historical.

General Down Syndrome Facts

Fact: Down’s Syndrome is also known as Down Syndrome and trisomy 21.

Fact: Down’s Syndrome is caused by a partial or complete extra copy of chromosome 21 out of a total of 46.

Fact: Down’s Syndrome is often associated with varying levels of cognitive ability and physical development.

Fact: A parental age of over 35 is associated with a sharp increase in the risk of a newly concieved child having Down’s Syndrome.

Fact: The incidence of Down’s Syndrome is estimated as between 1 in 800 to 1 in 1000.

Fact: Down’s Syndrome can affect any child.

Fact: Down’s Syndrome is a genetic disorder and is not contagious.

Fact: Down’s Syndrome, being a genetic disorder, cannot develop in a previously genetically normal child.

Fact: Children and adults with Down’s Syndrome often lead full and happy lives with appropriate help and support.

 

Medical Down Syndrome Facts

Fact: Down’s Syndrome is often identified during pregnancy and almost always diagnosed at birth.

Fact: Down’s Syndrome can be a result of several different genetic mechanisms, including mutation and transcription.

Fact: Many common physical features of Down’s Syndrome also appear in people with normal genetics, such as epicanthic folds, single transverse palmar creases, and Brushfield spots, just to name a few.

Fact: People with Down’s Syndrome can have serious abnormalities in or affecting any system in the body.

Fact: There’s a lot of room for variation in the medical consequences of the extra genetic material that leads to Down’s Syndrome, and these consequences can affect the function of any organ system or bodily process.

Fact: It’s impossible to predict the symptoms that any given child with Down’s Syndrome will have before birth. Some symptoms will be obvious at birth, such as congenital heart defects, while others, such as epilepsy, will show up later.

Fact: Parental ages over 35 have been linked to a higher incidence of Down’s Syndrome in children.

Fact: Early maternal blood tests can give pointers towards or away from a diagnosis of Down’s Syndrome, but if positive should not be relied upon completely.

Fact: Children with Down’s Syndrome often experience delayed gross and/or fine motor control skills.

Fact: Health care aspects of Down’s Syndrome include anticipating and preventing the known adverse effects of the condition, recognizing complications arising from the genetic disorder, managing symptoms as they come up, and helping the person with Down’s Syndrome and family members with understanding and coping with the disorder itself.

Fact: The most common features and problems associated with Down’s Syndrome are characteristic facial features, cognitive problems, congenital heart disease, hearing problems, being rather short, thyroid problems and Alzheimer’s disease.

Fact: The most prevalent rare and serious disease associated with Down’s Syndrome are leukemia, immune deficiencies and epilepsy.

Fact: With the exception of leukemia and testicular cancer, people with Down’s Syndrome don’t suffer from cancer nearly as much as the general population, but no one knows quite why.

Fact: People with Down’s Syndrome have a much lower risk of hardening of the arteries and eye disease due to diabetes.

Fact: The average lifespan of someone with Down’s Syndrome in the United States was 49 years as of 2002. However, a huge amount of variation was seen across the socioeconomic spectrum.

Fact: The life expectancy of people with Down’s Syndrome has risen an average of 25% since the 1980’s.

Fact: Fertility in people with Down’s Syndrome is decreased across both genders.

Fact: Genetic research is ongoing to find the genes responsible for Down’s Syndrome. There are a multitude of genes that do not have a known function. However, breakthroughs are happening all the time.

Fact: Vitamin supplements such as supplemental antioxidants and folinic acid, a precursor to Vitamin A, have not shown any effectiveness in the treatment of Down’s Syndrome.

Fact: People who have Down’s Syndrome have lower blood pressure in the brain itself. This is important to note if attempting therapy with any given medication.

Fact: Down’s Syndrome can lead to gastrointestinal problems ranging from mild to severe. Some diets, such as the specific carbohydrate diet, have shown significant help with solving these GI problems. Reducing pain and misery from GI problems is wonderful in and of itself and it can give a child the ability to focus on cognitive and physical development more.

Fact: Considering that Down’s Syndrome is known to cause thyroid dysfunction, which is directly related to metabolism, check thyroid function often. If a person with Down’s Syndrome is having metabolic problems, he or she will have a serious problem focusing and learning.

 

Cognitive Down Syndrome Facts

Fact: People with Down’s Syndrome tend to suffer from mild to moderate learning disabilities, with a small number suffering severe to profound mental disability.

Fact: Cognitive development in children with Down’s Syndrome is quite variable and cannot be reliably predicted.

Fact: Cognitive ability is not linked one way or the other to the appearance or absence of any number of physical features.

Fact: Children with Down’s Syndrome frequently show a long delay time between the point they can understand speech and the point they can speak because of fine motor control issues.

Fact: Augmentative and alternative communication methods are often used with great success for children with Down’s Syndrome as it helps them to communicate effectively before their muscular development has caught up.

Fact: The best overall treatment for Down’s Syndrome thus far is a supportive, caring family, competent medical treatment for symptoms as they come up, and an individualized program of physical and occupational therapy.

Fact: There are a multitude of medications on the market today that are supposed to help with cognitive ability. The only one shown to be safe in children thus far is piracetam, and it doesn’t have any effect when used alone.

Fact: Even when piracetam is used concurrently with choline, the effectiveness is spotty and largely unproven.

Fact: Medications to increase cognitive ability in adults are legion, but their effectiveness for adults with Down’s Syndrome is questionable.

 

Social Down Syndrome Facts

Fact: Early childhood intervention and a supporting home environment are two of the most important factors in helping children with Down’s Syndrome.

Fact: People who suffer only mild to moderate cognitive impairment can probably learn to perform many tasks that lead towards a fuller life.

Fact: Approximately 90% of children who have been identified with Down’s Syndrome before birth are aborted as reported by a study of elective abortion rates in the 1999 edition of the American Journal of Medical Genetics . Ethicists are worried about this tendency towards “eugenics by abortion.”

Fact: Many children with Down’s Syndrome benefit from being in a mainstream classroom provided that suitable adjustments are made for the benefit of all concerned.

Fact: Large strides have been made since the 1960’s in improving appropriate education, housing and social settings for people with Down’s Syndrome. The emphasis today is on creating environments that are accessible and supportive of people with Down’s Syndrome and their families.

Fact: People with Down’s Syndrome are educated in the normal school system in many countries, and those schools are providing ever increasing opportunities to move from segregated education to regular education in high quality settings.

Fact: The first World Down’s Syndrome Day was held on March 21, 2006. The day was chosen to represent the 21st chromosome, and the third month chosen to represent trisomy.

Fact: The National Down Syndrome Society of the United States observes Down Syndrome Month every October to try and dispel stereotypes, provide accurate education, and raise awareness of the potential of people with Down’s Syndrome.

Fact: South Africa holds Down’s Syndrome Awareness Day every October 20th.

Fact: The Special Olympics in Hawaii provide year-round sports training for people with intellectual disabilities including Down’s Syndrome

Fact: Down’s Syndrome had become the most recognizable form of mental disability by the early twentieth century.

 

Historical Down Syndrome Facts

Fact: Down’s Syndrome is named after John Langdon Down, the British doctor who first described the syndrome scientifically in 1886.

Fact: Down’s Syndrome was once known as Mongoloid idiocy. It was finally changed after a number of doctors and the Mongolian representative to the UN objected to the negative inferences.

Fact: Down’s Syndrome was identified as a trisomy of chromosome 21 by Jerome Lejeune in 1959.

Fact: People with Down’s Syndrome were housed in institutions or colonies and excluded from society even up into the first half of the twentieth century.

Fact: Parents and parental organizations have joined forces with medical caregivers to advocate greater inclusion for people with Down’s Syndrome since the 1960’s

Fact: The United States National Institute of Health convened a conference in 1975 to standardize the nomenclature of disorders and malformations. At that time, they recommended eliminating the possessive form of a disorder’s name because the person the disorder is named after neither had nor owned the disorder in question. Therefore, people who live in the US and some other countries don’t use Down’s Syndrome, they use Down Syndrome. People in the UK and other countries still use Down’s Syndrome.

 

 

Research and Main write by Loni Ice, minor editing by Donald Urquhart