A Young Man’s Rare Condition Made Him an Unexpected Hero Online

Want to understand Parry-Romberg syndrome symptoms, its rarity, possible treatments, and how social media helps spread awareness? Lukas Caldwell, a 20-year-old living with the condition, has become a voice for others. His personal story offers insight into life with PRS, available treatments, and the powerful role of social media in connecting and educating people.

Lukas got his diagnosis at age 7.

Lukas Caldwell, a college student from Nebraska, uses his large social media following of 3 million on TikTok and 102K on Instagram to bring attention to Parry-Romberg syndrome.

His journey began when his mom noticed a discoloration on the right side of his face. After many doctor visits and a biopsy, he was diagnosed with PRS—a rare neurological disorder that leads to gradual facial tissue loss. The National Institutes of Health explains it as a condition that mainly impacts one side of the face, causing visible changes over time. For Lukas, it affected the right side.

The condition usually starts young and gets worse over time.

Parry-Romberg syndrome is rare, with estimates suggesting it affects one in 250,000 people, though many go undiagnosed. It typically impacts one side of the face but can rarely affect both.

The exact cause is unclear, but some suggest autoimmune issues, while others look to genetics. However, Lukas’ twin, Ben, does not have PRS, suggesting the cause may be more complex. Lukas noticed facial changes early on and described the slow transformation as something “hard to get used to.”

Living with PRS took an emotional toll.

Lukas faced a lot of teasing and misunderstanding from a young age. Kids called him “half face,” and one painful memory came from a cashier who laughed at his appearance and asked, “What happened?”

Despite these challenges, Lukas leaned on his family for support, especially his twin brother Ben. Having a twin without PRS reminded Lukas of what he might have looked like, but also gave him the strength to keep going.

He began sharing his story online in high school.

A TikTok video using a facial symmetry filter went viral, sparking Lukas’ decision to post regularly about PRS. He began sharing his experiences with surgeries like jaw adjustments and fat transfers aimed at restoring facial balance.

His content not only spread awareness about PRS but also connected him with others facing rare conditions. He promoted self-love and encouraged people to embrace their differences without shame.

Lukas has been open about his medical treatments.

He’s shared everything from doctor visits to post-surgery recovery, using his platform to normalize these topics. His goal is to motivate others to prioritize their health and feel empowered in doing so.

Through social media, Lukas advocates for those with rare conditions and promotes empathy. His transparency reminds others not to judge by appearance, and his message continues to uplift and unite a growing community.