Williams Syndrome

DISABILITY CATEGORY

Intellectual Disability—Williams-Beuren Syndrome

DEFINITION

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines intellectual disability as...

“...significantly subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior. And manifested during the developmental period that adversely affects a child's educational performance.”

[34 Code of Federal Regulations §300.8(c)(6)]

OTHER DEFINITIONS AND DESCRIPTIONS

Williams Syndrome is a rare genetic disorder that is present at birth and characterized by mild to moderate intellectual disabilities, a distinctive facial appearance, and unique personality characteristics.  It is characterized by medical problems including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. Every individual with Williams syndrome is unique and intellectual disabilities, facial appearances, and personalities

(William Syndrome Association, WSA, 2019)
(National Institute of Neurological Disorders and Stroke, NINDS, 2019)

FACTS AND STATS

Williams syndrome affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

(WSA, 2019)

CAUSES

Williams syndrome is caused by the spontaneous deletion of 26-28 genes on chromosome 7. The deletion occurs in either the egg or the sperm and is present at the time of conception. It is likely that the elastin gene deletion accounts for many of the physical features of Williams syndrome. Some medical and developmental problems are probably caused by deletions of additional genetic material near the elastin gene on chromosome 7. The extent of these deletions varies among individuals. A blood test can establish whether the elastin gene and other genes are missing.

In most families, the child with Williams syndrome is the only one to have the condition in his or her entire extended family. However, the individual with Williams syndrome has a 50% chance of passing the disorder on if they decide to have children.

(WSA, 2019)

PREVENTION

There is no known method of prevention for the genetic abnormality that causes Williams syndrome.

CHARACTERISTICS

Common features of Williams syndrome include:

(WSA, 2019)

MEDICAL TREATMENT

There is no cure for Williams syndrome, nor is there a standard course of treatment. Because WS is an uncommon and complex disorder, multidisciplinary clinics have been established at several centers in the United States. Treatments are based on an individual’s particular symptoms. Many babies with Williams syndrome have life-threatening cardiovascular problems. Costly and ongoing medical care with early interventions (such as speech or occupational therapy) may be needed. People with WS require regular cardiovascular monitoring for potential medical problems, such as symptomatic narrowing of the blood vessels, high blood pressure, and heart failure.

(NINDS, 2019)
(WSA, 2019)

PROGNOSIS

The prognosis for individuals with WS varies. As adults, most people with Williams syndrome will need supportive housing to live to their full potential. Some adults are able to function independently, complete academic or vocational school, and live in supervised homes or on their own; most live with a caregiver. Parents can increase the likelihood that their child will be able to live semi-independently by teaching self-help skills early. Early intervention and individualized educational programs designed with the distinct cognitive and personality profiles of WS in mind also help individuals maximize their potential. Medical complications associated with the disorder may shorten the life spans of some individuals with WS. Many adults with WS contribute to their communities as volunteers or paid employees.

(NINDS, 2019)
(WSA, 2019)

EDUCATIONAL IMPLICATIONS

Please see the section of the Williams Syndrome Association’s website for educators. Information for teachers is available including educational strategies and information regarding music education and therapy.

www.williams-syndrome.org/teacher

MUSIC AND WILLIAMS SYNDROME

Many individuals with Williams syndrome have an affinity to music. They are touched by music in ways not usually seen in the general population. Some have observed that individuals with  with Williams syndrome to be reduced to tears by classical music, are disturbed by minor chords, or moved to dance and laugh by playful and “happy” music.

The affinity for music in people with Williams syndrome, especially their sense of rhythm, ability to remember lyrics, and hearing sensitivity can be a strength for these individuals. Music therapy is often used in the educational setting to help with math skills and other concepts. Sometimes the natural affinity for music progresses to excellent music ability. Children may benefit from music lessons.

(WSA, 2019)

ORGANIZATIONS AND RESOURCES

Williams Syndrome Association
www.williams-syndrome.org
570 Kirts Blvd., Suite 223
Troy, MI 48084-4153
248.244.2229
800.806.1871

The WSA is the only group in the US devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome.  The WSA website provides general information about Williams syndrome and special pages especially for parents and teachers of children with Williams syndrome.

Williams Syndrome Foundation (USA)
williams-syndrome.org.uk
Suite 2367, 145-147 Boston Road
Ealing, London W7 3SA
Phone (UK): 0208 5671374
enquiries@williams-syndrome.org.uk

The Williams Syndrome Foundation (WSF) seeks to create or enhance opportunities in education, housing, employment and recreation for people who have Williams Syndrome and other related or similar conditions. The WSF identifies, initiates, funds and provides strategic guidance for major, long-range development projects, either by itself, or by cooperating with other organizations. The WSF website provides useful information about various aspects Williams syndrome as well as resources for new WS parents and families.

National Institute of Neurological Disorders and Stroke (NINDS)
www.ninds.nih.gov
P.O. Box 5801
Bethesda, MD 20824
800.352.9424

The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.  NINDS provides information on Williams syndrome.

National Organization for Rare Disorders – Williams Syndrome (NORD)
rarediseases.org/rare-diseases/williams-syndrome/
55 Kenosia Avenue
Danbury, CT 06810
Phone: 203.744.0100
Fax: 203.263.9938

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 280 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. NORD provides information on Williams syndrome.

Last update October 2019.