A new specialty center opened Tuesday at the Hospital of the University of Pennsylvania in Philadelphia.
It’s one of the first in the country to help children and adults with Williams syndrome, a rare condition that makes them extra friendly.
“This center is going to be life-changing for families,” said Jocelyn Krebs, director of the Armellino Center of Excellence for Williams Syndrome.
For Krebs, this work is personal. She researched the disorder for decades and then had a child born with the condition, which she calls “an insane coincidence.”
“Suddenly I went from a scientist who understood Williams syndrome very deeply in one way to a mom trying to figure out, what do you do with a kid that has these various challenges?” Krebs said.
The center includes a sensory room with different lights and playful distractions to ease anxiety, which is common for people with Williams syndrome.
Krebs’ son Rhys has intellectual disabilities, a primary symptom of Williams syndrome.
In collaboration with Children’s Hospital of Philadelphia, the center will provide comprehensive care and research for adults and children with Williams syndrome, which often comes with severe heart problems and social challenges.
“A behavior that is very characteristic of Williams syndrome, sometimes called the cocktail party syndrome because of it … is this incredible friendliness, hypersociability,” Krebs said. “And what it really is is just a completely uninhibited social approach.”
With the right kinds of early intervention, people with Williams are able to thrive. This center will help assure that can happen and look for better treatments and new hope for brighter futures.
An estimated 20,000 to 30,000 people in the United States have Williams syndrome, which is diagnosed with genetic testing.
Learn more about the center on Penn Medicine’s website.
