May is Williams Syndrome Awareness Month!

May 7, 2013

In 2010, the Williams Syndrome Association designated the first full week in May as “Williams Syndrome Awareness Week.” In the years since, the number of awareness events for Williams Syndrome held annually has grown tremendously, and this year, Congressman Jim Moran will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams Syndrome Awareness month. What do you know about Williams Syndrome? The following will give you a brief introduction:

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 one 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 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, 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.

Common features of Williams Syndrome include:

  • Cardiovascular disorders
  • Kidney and gastrointestinal disorders
  • Similar facial features
  • Developmental delays
  • Learning disabilities
  • Hypercalcemia (elevated blood calcium levels)
  • Anxiety
  • Low birth-weight/slow weight gain
  • Feeding problems
  • Dental abnormalities
  • Hernias
  • Hyperacusis (sensitive hearing)
  • Musculoskeletal problems

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