BUSINESS INSIDER – Williams syndrome is a rare genetic condition that causes extreme friendliness. Living with it can be bittersweet.
Since he was 5, Tobi Akbas has been nicknamed “the Mayor” in the affluent suburb of Garrison, New York, where he lives.
When his mom would take him to the supermarket, he would say hi to every person they saw. In high school, he’d wait in front of the school building to greet students as they arrived.
Now 22, Tobi still craves human connection like oxygen. He’s the unofficial ambassador of a Garrison volunteer firefighting squad, handing out candy canes at the annual Santa Run. He posts motivational “Tobi tips” online — as well as sharing them with anyone who asks.
Tobi has a rare genetic condition called Williams syndrome that can be characterized by extreme friendliness, low inhibitions, and a deeply trusting nature.
Those who have it may treat strangers as if they were old friends. Recent studies have found that some of the genetic variants that explain why domesticated dogs are more sociable than wolves are shared by people with Williams syndrome.
It is the result of the deletion of about 20 genes and affects an estimated 20,000 to 30,000 people in the US, according to the Williams Syndrome Association.
People living with the syndrome tend to have a normal life expectancy, though about 80% have cardiovascular issues, sometimes severe ones that can require multiple surgeries. There’s a 50% chance of passing the condition to their children.
Three-quarters have intellectual disability, which can vary from mild to moderate. Most need support throughout their lives.
I’ve traveled to Garrison to spend a few days with Tobi and his family. I want to understand what his life is like and how he’s managing the shift to more independence in his 20s — and maybe to pick up a few Tobi Tips for myself …