how long have treatment for down syndrome been around

Is there any treatment for Down syndrome?

Some defects are minor, which can be managed with medication, but in some cases the defects require surgery. However, every individual with Down syndrome will possess each of these characteristics to a different degree or not at all.

What is the history of Down syndrome?

On the diagnostic term ‘‘Down’s disease’’. Med. Hist. 23, 102–104 (1979). Down syndrome is first detected using a form of amniocentesis that is later abandoned due to health risks. Amnios do not come into common use in the United States until safety trials are completed in 1976.

How many drugs have been used to treat Down syndrome?

By 2011, a total of ten different drug treatments have been shown to correct learning and memory deficits and some cellular abnormalities in the Ts65Dn mouse model of Down syndrome. The drugs have very different properties and many are FDA-approved, spurring interest in pursuing clinical trials.

How long do people with Down syndrome live?

Due to a number of advances in medical technology, people with Down syndrome are living longer than ever before. In 1910, the expected age of survival for children with Down syndrome was nine years.

How long has Down syndrome testing been around?

Screening for fetal Down's syndrome first became possible in the late 1960s, when the positive association between maternal age and the prevalence of Down's syndrome at birth was identified and a diagnostic test (amniocentesis and fetal karyotyping) became available.

How were people with Down syndrome treated historically?

Historically in the United States, the majority of people with Down syndrome and other intellectual and developmental disabilities were kept in inhumane institutions where they were deprived of education, healthcare and even plumbing.

Has Down syndrome been treated?

Down syndrome cannot be cured. Early treatment programs can help improve skills. They may include speech, physical, occupational, and/or educational therapy.

When was Down syndrome invented?

Jérôme Lejeune discovered that Down syndrome was caused by an extra chromosome on the 21st pair while working in Raymond Turpin's laboratory In 1958. The French Academy of Sciences published his scientific work on January 26, 1959.

When was the first case of Down syndrome diagnosed?

An ancient disorder British physician John Langdon Down first described Down syndrome as a unique disorder in 1866. Despite this relatively recent identification of the condition, paintings and sculptures have depicted Down syndrome for centuries.

Were there people with Down syndrome in medieval times?

The oldest confirmed case of Down's syndrome has been found: the skeleton of a child who died 1500 years ago in early medieval France. According to the archaeologists, the way the child was buried hints that Down's syndrome was not necessarily stigmatised in the Middle Ages.

What is the history of Down syndrome?

It is named after British doctor John Langdon Down, who fully described the syndrome in 1866. Some aspects of the condition were described earlier by French psychiatrist Jean-Étienne Dominique Esquirol in 1838 and French physician Édouard Séguin in 1844. The genetic cause of Down syndrome was discovered in 1959.

Is Down syndrome treated with medication?

Medication Summary Drug therapy is not currently a component of the standard of care for Down syndrome. Medications are indicated only for symptomatic treatment of pain.

Could Down syndrome have been prevented?

There's no way to prevent Down syndrome. If you're at high risk of having a child with Down syndrome or you already have one child with Down syndrome, you may want to consult a genetic counselor before becoming pregnant. A genetic counselor can help you understand your chances of having a child with Down syndrome.

What was Down's syndrome before?

The Origins of the Term Down Syndrome In 1866 British physician, John Langdon Down, for whom the syndrome is now named, first described Down syndrome, as “Mongolism.” The term Down syndrome didn't become the accepted term until the early 1970s.

What is the oldest Down syndrome?

RUPERT, Idaho — According to the CDC's most recent statistics, the average lifespan for a Down syndrome patient is 47 years. Rupert resident, Bryce Walker, is 76-years-old and lives with Down syndrome, making him one of the world's oldest surviving Down syndrome patients.

How did John Down discover Down syndrome?

Langdon Down began by examining the palates and tongues of the residents and in his 1862 report he said "in 16 cases the tongue presented a sodden appearance and exhibited transverse furrows on its dorsal surface; in all these patients one is able to trace a marked physiological and psychological agreement.

When did Down syndrome become accepted?

The term Down syndrome didn’t become the accepted term until the early 1970s. More was learned about the condition in 1959 when French Pediatrician/Geneticist Professor Jerome Lejeune discovered that individuals with Down syndrome have an extra chromosome—just one year before NADS was founded.

What was the role of Down syndrome in the United States?

During the first half of the twentieth century in the United States, the majority of children with Down syndrome were placed in institutions – frequently soon after birth. This resulted in great human sacrifice for those individuals and for their families, who were convinced, often by members of the medical community, that the child was less than human and that their needs would be so great, their families would not be able to raise them. These children were “warehoused” in large state institutions – often in deplorable conditions – locked away so that the rest of society could not see the horror of their lives .

What was the name of the organization that helped parents with Down syndrome?

In the sixties and early seventies, the condition was not known as Down syndrome but “Mongolism,” and the original name of the organization was Mongoloid Development Council (MDC). With the help of a few other parents, Kay formed an informal board, and for many years their meetings were held in the home of Kay and Marty McGee. Kay ultimately became the Executive Secretary, and she was the driving force behind the organization from 1960 to 1975. (Kay actually completely filled the role of president, but in 1960, women were not usually seen as presidents of organizations.) In addition to the day-to-day running of the organization—handling all phone calls in her home, doing the clerical work and information flyers (keep in mind that NADS didn’t begin using computers until 1989)—Kay organized regular meetings for parents in downtown Chicago, bringing in speakers from as far away as Germany. All the Down syndrome conferences in the 1960’s and early 1970’s were held in the Chicago area. Kay and the other parent founders of NADS were truly pioneers as they developed support systems for each other and especially for new parents.

Why were Down syndrome children locked away?

These children were “warehoused” in large state institutions – often in deplorable conditions – locked away so that the rest of society could not see the horror of their lives. This was the climate that the founders of the National Association for Down Syndrome had to deal with when their children were born in 1960.

What are the goals of Down syndrome?

The goals of this program are to provide support to adults with Down syndrome who fall into the following categories: 1 Young adults who are out of school and living at home. 2 Adults in need of assistance to get involved in their community. 3 Older adults who have not received services and have become isolated.

Where were the Down syndrome conferences held?

All the Down syndrome conferences in the 1960’s and early 1970’s were held in the Chicago area. Kay and the other parent founders of NADS were truly pioneers as they developed support systems for each other and especially for new parents.

Who was the first Treasurer of the Down Syndrome Congress?

The Down Syndrome Congress was founded in 1973, and Kay McGee was elected to be its first Treasurer and NADS Board President Lucille Msall became Recording Secretary. Later the DSC added “National” to their name.

How early can you get help with Down syndrome?

2, 3 This assistance can begin shortly after birth and often continues until a child reaches age 3. 4 After that age, most children receive interventions and treatment through their local school district.

What is the treatment for Down syndrome?

What are common treatments for Down syndrome? There is no single, standard treatment for Down syndrome. Treatments are based on each individual's physical and intellectual needs as well as his or her personal strengths and limitations. 1 People with Down syndrome can receive proper care while living at home and in the community.

How does a physical therapist help a child with Down syndrome?

A physical therapist also can help a child with Down syndrome compensate for physical challenges, such as low muscle tone, in ways that avoid long-term problems.

What supplements do people with Down syndrome take?

Drugs and Supplements. Some people with Down syndrome take amino acid supplements or drugs that affect their brain activity. However, many of the recent clinical trials of these treatments were poorly controlled and revealed adverse effects from these treatments.

What is early intervention?

“Early intervention” refers to a range of specialized programs and resources that professionals provide to very young children with Down syndrome and their families. These professionals may include special educators, speech therapists, occupational therapists, physical therapists, and social workers.

Why do Down syndrome patients get frustrated?

Children with Down syndrome may become frustrated because of difficulty communicating, may develop compulsive behaviors, and may have Attention Deficit Hyperactivity Disorder and other mental health issues.

When do you need surgery for Down syndrome?

For example, an infant with Down syndrome may need surgery a few days after birth to correct a heart defect; or a person with Down syndrome may have digestive problems ...

What type of therapy is best for Down syndrome?

With speech therapy , a child with Down syndrome can learn how to overcome these obstacles and communicate more clearly. Some kids also benefit from learning and using sign language. Occupational therapy: This type of therapy helps children develop the skills they'll need to be as independent as possible.

When should children with Down syndrome start receiving early intervention services?

The Individuals With Disabilities Education Act (IDEA) mandates that all children born with Down syndrome should begin receiving early intervention services as soon after birth as possible.

How does Down syndrome affect a baby?

Physical therapy: Most babies with Down syndrome have hypotonia (low muscle tone) that can slow their physical development and, if not treated, lead to problems such as bad posture later in life. Physical therapy can help them to develop muscle tone and strength, and also teach them how to move their bodies in appropriate ways that help their daily functioning.

What percentage of people with Down syndrome are born with a thyroid problem?

For example, according to the National Down Syndrome Society (NDSS), around 10 percent of people with the disorder are born with a thyroid problem or develop one later in life. 3  The most common of these is hypothyroidism, in which the thyroid gland doesn't produce enough of a hormone called thyroxin.

What is early intervention?

Early intervention, according to the NDSS, is a "systematic program of therapy, exercises, and activities designed to address developmental delays that may be experienced by children with Down syndrome or other disabilities. ". 1  Early intervention typically includes these three types of therapy:

What do kids with Down syndrome need?

Most kids with Down syndrome need therapies of various types. Some are focused on helping patients reach physical milestones at the same rate as those who don't have the disorder. Others are aimed at helping them become as independent as possible when they reach adulthood.

What is the name of the hormone that is given to people with Down syndrome?

People with hypothyroidism—with or without the additional diagnosis of Down syndrome—usually take a synthetic form of the hormone (levothyroxine) by mouth to manage the condition.

When can Down syndrome be stimulated?

Available in most states, these special programs offer infants and young children with Down syndrome stimulation at an early age (typically until age 3) to help develop motor, language, social and self-help skills.

How to help people with Down syndrome?

Participate in social and leisure activities. Take time for family outings and look in your community for social activities such as park district programs, sports teams or ballet classes. Although some adaptations may be required, children and adults with Down syndrome can enjoy social and leisure activities.

How do people with Down syndrome live?

Most people with Down syndrome live with their families or independently, go to mainstream schools, read and write, participate in the community, and have jobs. People with Down syndrome can live fulfilling lives. By Mayo Clinic Staff.

What is the best test for Down syndrome?

Diagnostic tests that can identify Down syndrome include: Chorionic villus sampling (CVS). In CVS, cells are taken from the placenta and used to analyze the fetal chromosomes. This test is typically performed in the first trimester, between 10 and 13 weeks of pregnancy.

What to do if your Down syndrome test is positive?

If your screening test results are positive or worrisome, or you're at high risk of having a baby with Down syndrome, you might consider more testing to confirm the diagnosis. Your health care provider can help you weigh the pros and cons of these tests.

How does early intervention help children with Down syndrome?

Early intervention for infants and children with Down syndrome can make a major difference in improving their quality of life. Because each child with Down syndrome is unique, treatment will depend on individual needs. Also, different stages of life may require different services.

What emotions do you feel when you learn your child has Down syndrome?

When you learn your child has Down syndrome, you may experience a range of emotions, including anger, fear, worry and sorrow. You may not know what to expect, and you may worry about your ability to care for a child with a disability. The best antidote for fear and worry is information and support.

Who first described trisomy 21?

Different scientists described evident illustration of the syndrome in 15thand 16thcentury paintings. Esquirol wrote phenotypic description of trisomy 21 in 1838. English physician, John Langdon Down explained the phenotype of children with common features noticeable from other children with mental retardation. He referred them “Mongoloids” because these children looked like people from Mongolia (12-15).

What is trisomy 21?

Trisomy 21 is coupled with a propensity for brachycephaly, duodenal atresia, cardiac defects, mild ventriculomegaly, nasal hypoplasia, echogenic bowel, mild hydronephrosis, shortening of the femur and sandal gap and clinodactyly or middle phalanx hypoplasia of the fifth finger. The first reported marker associated with DS was the thickening of the neck area (30, 31). 40-50 percent of affected fetuses have a thickened nuchal fold measuring ≥ 6 mm in the second-trimester (32, 33). After using of screening by nuchal translucency (NT), about 83% of trisomy 21 pregnancies were identified in the first trimester. Later, it was revealed that screening by a combination of maternal age, NT and bi-test [pregnancy-associated plasma protein (PAPP-A) with second trimester free β chorionic gonadotropin (β-hCG)] or tri-test [alpha-fetoprotein (AFP), estriol and free β-hCG] has a potential sensitivity of 94% for a 5% false-positive rate (34-36).

What is DS in medical terms?

Down syndrome (DS) is a birth defect with huge medical and social costs, caused by trisomy of whole or part of chromosome 21. It is the most prevalent genetic disease worldwide and the common genetic cause of intellectual disabilities appearing in about 1 in 400-1500 newborns. Although the syndrome had been described thousands of years before, it was named after John Langdon Down who described its clinical description in 1866. Scientists have identified candidate genes that are involved in the formation of specific DS features. These advances in turn may help to develop targeted therapy for persons with trisomy 21. Screening for DS is an important part of routine prenatal care. Until recently, noninvasive screening for aneuploidy depends on the measurement of maternal serum analytes and ultrasonography. More recent progress has resulted in the development of noninvasive prenatal screening (NIPS) test using cell-free fetal DNA sequences isolated from a maternal blood sample. A review on those achievements is discussed.

What is DS screening?

Screening for DS is an important part of routine prenatal care. The most common screening method contains the measurement of a combination of factors: advanced maternal age, multiple second trimester serum markers, and second trimester ultrasonography (Table 2) (25-26).

Is there a cure for DS?

There is no medical cure for DS. However, children with DS would benefit from early medical support and developmental interventions initiation during childhood. Children with DS may benefit from speech therapy, physical therapy and work-related therapy. They may receive special education and assistance in school. Life expectancy for people with DS has improved noticeably in recent decades (61). Nowadays, cardiac surgery, vaccinations, antibiotics, thyroid hormones, leukemia therapies, and anticonvulsive drugs (e.g, vigabatrin) have significantly improved the quality of life of individuals with DS. Actually, life expectancy that was hardly 30 years in the 1960s is now increasing more than 60 years of age (3, 62-63).

What is Down syndrome health care?

Health care included practices such as changing bandages, care of feeding or breathing equipment, and giving medication and therapies. Over 40% of families of children with Down syndrome had a family member who stopped working because of the child’s condition.

How old was Down syndrome in 1960?

In 1960, on average, persons with Down syndrome lived to be about 10 years old. In 2007, on average, persons with Down syndrome lived to be about 47 years old. [ Read summary. external icon. ] Many factors can affect how long a person with Down syndrome lives.

What is prevalence in Down syndrome?

To estimate the prevalence of Down syndrome, the number of pregnancies affected by Down syndrome is compared to the total number of live births. [ Read summary.

How many babies with Down syndrome survived?

Between 1983 and 2003, about 9 3% of babies born with Down syndrome survived to one year of age. In the same time period, about 8 8% of babies born with Down syndrome survived to 20 years of age. [ Read summary. external icon.

How much weight do babies with Down syndrome die?

These babies are 24 times more likely to die in the first 28 days of life compared to infants with Down syndrome of normal birth weight (between 2,500 grams and 4,000 grams, or between 5.5 and 8.8 pounds). [ Read summary. external icon. ]

How much did the number of babies born with Down syndrome increase between 1979 and 2003?

Between 1979 and 2003, the number of babies born with Down syndrome increased by about 30%. [ Read summary. external icon. ] Older mothers are more likely to have a baby affected by Down syndrome than younger mothers. In other words, the prevalence of Down syndrome increases as the mother’s age increases.

Can Down syndrome go away on its own?

Many of these conditions will need surgery, while some milder heart defects might go away on their own as the child grows and may only need to be monitored by a healthcare provider. [ Read summary. external icon.

When did people with Down syndrome become normal?

From the mid-1800s to as late as the 1990s in some cases, people with Down syndrome were often discriminated against.

When was Down syndrome discovered?

The Discovery of Down Syndrome. According to the National Down Syndrome Society, Down syndrome was first recognized in 1866 by British physician John Langdon Down. He helped to set the condition apart from mental disability by coining the first term used to describe those with Down syndrome: “mongoloid”. In Down’s opinion, the children ...

Why was Down syndrome common practice?

When Down syndrome was first being discovered, it was common practice to separate children with the genetic condition and other mental disabilities from society.

What is the condition where you have a full or partial extra copy of chromosome 21?

Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21, a condition which can cause mental and physical disabilities.

Why is Down syndrome important?

Every day more and more Americans are interacting with people who have Down syndrome, which only increases the need for widespread awareness of the genetic condition and, most importantly, the acceptance of those who have it.

What was the ADA in 1986?

It stressed the need for federal civil rights legislation for people with disabilities. Four years later, George H.W. Bush signed the Americans with Disabilities Act (ADA), which provides complete civil rights protection for people with intellectual and developmental disabilities.

What race is Down syndrome?

In Down’s opinion, the children with the genetic condition shared similar characteristics to the people of the Mongolian race. The term “Down syndrome” was suggested later by a group of geneticists who wrote to the British medical journal, The Lancet, with four alternatives to “mongoloid.”. Down syndrome was later endorsed by ...

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Background Information

Building A Strong Organization

• Name Change
  Even though MDC primarily served the Chicago metropolitan area, the organization received requests for information from all over the country. Therefore in 1972 when a decision to remove what became known as the “M” word from our name and materials, the organization changed it…
• History of the Parent Support Program
  During the 1960’s and early 1970’s Kay McGee and Marjorie Lee, whom Kay described as “the most knowledgeable and involved parent there was,” would visit hospitals where they pleaded with nurses in the newborn nurseries to notify them when a baby was born with Down syndrome…

See more on nads.org

Complex Medical Issues

Education

Meeting The Needs of Adults with Down Syndrome

Meeting The Needs of The Underserved in The Down Syndrome Community

Nads Involvement with Down Syndrome Research

Resources

Nads Presidents

in Memory of 2 Beloved Staff Members