MEDICAL

The medical profile of individuals with Williams syndrome is highly variable. Common medical characteristics include cardiovascular issues, kidney anomalies, and gastrointestinal problems. These issues can range from mild to severe when evident but no issue affects everyone. Individuals with Williams syndrome need regular monitoring for potential medical problems by a physician familiar with the disorder.

Diagnosing Williams Syndrome

Williams syndrome is a contiguous gene syndrome, which means that all of the deleted genes "line up" within the Williams syndrome "critical region" of 26-28 genes. There are two DNA tests that can determine if a person has Williams syndrome. The FISH test and the Microarray.

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Healthcare Guidelines

Knowing how to manage the health of your loved one with Williams syndrome, throughout their lifespan, can be a source of concern for families. These guidelines can help with this lifelong process.

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Anesthesia Concerns

In general, anesthesia is deemed safe for individuals with WS. However, there are reported cases of sudden death. Doctors are encouraged to conduct a careful review of all the literature prior to any procedure requiring anesthesia for a child with Williams syndrome.

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Cardiovascular Concerns

Cardiovascular concerns are common - affecting seventy-five percent of individuals with WS. The severity of issues varies widely, from benign murmurs to more complicated issues requiring one or more surgical interventions.

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Gastrointestinal Concerns

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Neurodevelopment and Behavioral Health

Individuals with Williams syndrome are often described as hyper-sociable, talkative and friendly, with very empathetic, polite, and happy personalities. People with WS may also display behavior issues and anxiety beginning at a very young age, and some may have specific phobias and fears.

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Williams Syndrome Clinics & Nationwide Clinical Consortium

Williams syndrome clinics are "specialty" clinics within medical institutions that provide care for children, and/or adults with Williams syndrome. These clinics provide a place where parents or other care-givers can bring their loved one to see specialists with an excellent knowledge of Williams syndrome.

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COVID-19 Vaccination Recommendations for those with WS

The Williams Syndrome Association’s medical advisors recommend that those eligible (age 5+) should actively pursue getting the COVID vaccine. There is no reason that we know of that a diagnosis of WS should prohibit a person from getting the vaccine. There may be other issues specific to the individual (previous anaphylaxis to one of the vaccine components or immunocompromised status), that would be rare and not related to WS, but may impact the decision. For those items, they should talk to the doctor that knows them best.

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