A man living with a rare condition that causes one side of his face to shrink has opened up about the “hardest part” of dealing with it. Lukas Caldwell, 20, from Nebraska, USA, was diagnosed with Parry-Romberg syndrome at the age of seven after his parents noticed discoloration on his face.
Parry-Romberg syndrome is a rare disorder that causes the skin and soft tissues on one side of the face to shrink. In some rare cases, both sides of the face or even limbs can be affected. Most people are diagnosed by age 10, with symptoms typically appearing before age 20. Although the exact cause is unknown, some believe it may have a genetic link.
Caldwell, who shares his journey on TikTok under the username @lukas.caldwell, uses the platform to raise awareness about the syndrome.
In an interview with Good Morning America, he discussed the biggest challenge of living with his condition: “People treat you differently because of how you look, whether you want to acknowledge it or not.”
He added, “That has made me internalize certain beliefs. I struggle with social anxiety, phobias, and other related issues. It’s not necessarily anyone’s fault; it’s just the way things are.”
“The hardest part for me is the gradual changes over time—it’s difficult to adjust. I look very different now compared to when I was eight or ten.”
“You never really settle into your identity because you’re constantly evolving due to treatments and the progression of the condition.”
Caldwell, who was bullied and nicknamed ‘half face’ as a child, has undergone several surgeries, including jaw reconstruction and plastic surgery. “I couldn’t have any reconstructive work done until I was 18 because they wanted to wait until my face had stopped growing,” he said.
His key message is to avoid judging others based on their appearance: “It’s shallow and superficial. That’s not how we should interact. I’ve learned that everyone has knowledge or experiences that you don’t, and that’s incredibly important.”