What is Williams Syndrome?

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.

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.

Unlike disorders that can make connecting with your child difficult, children with Williams syndrome tend to be social, friendly and endearing. Parents often say they could not have imagined the joy and perspective their child with Williams syndrome has brought into their lives. Nearly everyone with Williams syndrome loves music, and for some, there is a musicality and eventual talent for mu- sic that is far greater than would be expected based on general functioning levels.

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 or 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. And as adults, most people with WS need supportive housing to live to their full- est potential. Just as important are opportunities for social interaction. Adults with Williams syndrome often experience intense isolation which can lead to depression. They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships.

Other characteristics common to Williams syndrome are:

Hyperacusis (sensitive hearing)
Musculoskeletal problems
Low birth-weight / slow weight gain
Hypercalcemia (elevated blood calcium levels)
Feeding problems
Dental abnormalities
Kidney abnormalities
Hernias