An Unquenchable Thirst for Love: The Paradox of Living with Williams Syndrome

by Renée Canada

Imagine being driven by the desire for connection and love, yet finding yourself nearly incapable of sustaining either. Some struggling single folks might relate to this feeling in some bittersweet way. Yet for those born with the rare genetic disorder, Williams Syndrome, this is not the material for self-deprecating, bitingly humorous blogs or heartbreak-with-a-happy-ending Hollywood movies. A recent piece by NPR explored how people with WS, who thrive on social connection, unfortunately often find it nearly impossible to develop and sustain close relationships.

Williams Syndrome (WS) is caused by a deletion of approximately 26 genes on a sole chromosome. While this results in mental retardation, development delay, and cardiovascular problems, there are positive attributes as well. People with WS tend to have a cheery demeanor, great empathy and ease with strangers. However, sometimes this open trust for others can lead to sticky situations; they might climb into the car of a complete stranger or walk over to friendly looking grandmother of a classmate and ask, “Can I go home with you?”

On a more positive angle on not fearing strangers, a recent study published in the journal Current Biology found that children with WS showed no racial bias in social-bias experiments. Kids were asked to look at pictures of people of assorted ethnicities and genders and to assign negative or positive storylines to each picture. As predicted, the control group preferred those assumed to be of their own ethnic background and gender. Kids with WS had no ethnic preference, though gender was still a factor.

In addition to their love for others, people with WS tend to display a love and affinity of music, often possessing perfect pitch. However, they suffer from hyperacusis, which makes them extremely sensitive to noise at certain frequencies. Sadly, by age 30, the majority of individuals with WS have a form of moderate hearing loss.

Those with WS often have striking verbal abilities, particularly in short-term memory, syntax, and concrete vocabulary. However, they suffer in visuospatial construction (the skills to copy patterns, draw or write). Abstract/relational vocabulary is more limited.

Also due to spatial relationship deficiencies, those with WS have difficulties navigating from place to place. It is hard for them to organize and plan things. Plus, they find it extremely hard to concentrate and focus for sustained periods of time. As a result, as an adult, they find it tough to hold down a job, and perhaps, more importantly, fulfill perhaps their greatest desire: to form deep, interpersonal relationships.

Most with WS are very socially isolated. They often suffer from severe anxiety. An inability to pick up on the subtle social cues makes it a challenge to generate meaningful conversation and lasting relationships.

One can’t help but once again relate back to those single in the dating world. Often we can recognize our own worth, the strengths that we can bring to another person’s life, and are aware of our great capacity to give and receive love. Yet we’re constantly throwing ourselves pity parties when a suitor rejects us after one date, when we suffer the sting of an unrequited crush, or when a loving relationship dies right before our eyes, seemingly without warning. In spite of all the heartache and disappointments we live through, somehow, eventually, we manage to dust ourselves off, get back on our feet, and get back out there in our search for love.

But what of the folks with WS who, despite all their efforts, are literally handicapped from achieving their greatest desire for social acceptance and companionship? As new social training programs develop for people with WS, it is my hope that one day they too might grow closer to finding the love they so desperately seek.

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