Williams Syndrome

DISABILITY CATEGORY

Intellectual and Developmental Disabilities—Williams-Beuren Syndrome

TYPES

Mild to severe – depending upon the limitations of each individual due to the various conditions that may occur as a result of (WS).

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

Williams Syndrome is a genetic disorder that is present at birth and can affect anyone. 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. (WSA, 2012).

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 equally in both males and females and in every culture. (WSA, 2012). 

Causes

Williams syndrome is caused by a genetic mutation in which a small piece of chromosome 7 is deleted.  Although WS is not usually an inherited condition, individuals who have WS have a 50 percent chance of passing it on if they decide to have children. (NINDS, 2008)

Prevention

There is no known method of prevention for Williams syndrome.

Characteristics

Common features of Williams syndrome include:

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. 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, 2008).

Prognosis

The prognosis for individuals with WS varies. 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. (NINDS, 2008)

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.

http://williams-syndrome.org/teacher/information-for-teachers

Organizations and Websites

Williams Syndrome Association

PO Box 297
Clawson, MI 48017-02971-800-806-1871
www.williams-syndrome.org

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)

University of California
Irvine, CA 92697-2300
(949) 824-7259
www.wsf.org

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.