Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical and cognitive 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.
WS affects 1 in 7,500 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.
Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.
But there are major struggles as well. Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding. As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential. Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few are able to work a “full-time” job, or earn a large enough salary to be self-sustaining.
Opportunities for social interaction are vitally important as well. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression and increased anxiety. Individuals are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.The Williams Syndrome Association (WSA) was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is primarily a national organization but has members worldwide. It is the largest WS support organization in the world and a leader among Williams syndrome support groups.
The WSA is the most comprehensive resource for people and families living with Williams syndrome as well as doctors, researchers and educators. The WSA provides resources, support and the latest medical information to help families and caregivers of individuals with Williams syndrome throughout his/her life. Our mission as the largest and premier organization-serving individuals with Williams syndrome continues to be to improve the lives of people living with WS. The WSA offers support intended to help individuals with Williams syndrome live fuller, longer lives by helping families and caregivers navigate the challenges of the disorder from diagnosis through adulthood.