At just 20 years old, Lukas Caldwell is using his voice—and social media platforms with millions of followers—to raise awareness about Parry-Romberg syndrome (PRS), a rare neurological condition that causes the skin and tissue on one side of the face to slowly waste away.

Diagnosed at age 7 after his mother noticed discoloration on his face, Lukas has spent years adjusting to the physical and emotional toll of the disorder. PRS affects only about 1 in 250,000 people and is not well understood—its cause may be autoimmune or environmental, especially since Lukas’ identical twin, Ben, is unaffected.

Growing up in Nebraska, Lukas faced cruel teasing and public stares, but found strength in his family and especially in Ben, whose support helped Lukas feel seen and grounded. Despite the challenges, Lukas began to share his medical journey online—including surgeries and treatments—to shed light on the realities of PRS.

In one of his latest updates, Lukas documented a three-hour fat grafting surgery, where tissue from his stomach was transplanted to his face. More procedures are planned, and Lukas remains committed to showing the process as honestly as possible.

By telling his story, Lukas isn’t just fighting PRS—he’s building a powerful community for others living with rare conditions, reminding them they’re not alone.