Meet Lukas: His Journey with Parry-Romberg Syndrome and How He Looks Today

Curious about Parry-Romberg syndrome — its symptoms, rarity, treatment options, and how social media raises awareness? Meet Lukas Caldwell, a 21-year-old living with the condition, who has become an advocate for others. His story sheds light on life with PRS, available treatments, and the vital role social media plays in education and connection.

Lukas got his diagnosis at age 7.

Lukas Caldwell, a Nebraska college student, uses his massive social media presence — nearly 3 million followers on TikTok and 184,000 on Instagram — to raise awareness about Parry-Romberg syndrome.

His journey began when his mother noticed a discoloration on the right side of his face. After numerous doctor visits and a biopsy, he was diagnosed with PRS, a rare neurological disorder that causes gradual loss of facial tissue. According to the National Institutes of Health, the condition typically affects one side of the face, leading to visible changes over time. For Lukas, it’s the right side that’s been impacted.

The condition usually appears in early years and worsens as time goes on.

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.

From a young age, Lukas endured teasing and misunderstanding because of his appearance. Classmates cruelly called him “half face,” and one moment that still stings came when a cashier laughed at him and bluntly asked, “What happened?”

Through it all, Lukas relied on the unwavering support of his family, especially his twin brother, Ben. Seeing Ben — who doesn’t have PRS — often reminded Lukas of what he might have looked like, but their bond also gave him the strength to keep moving forward.

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.

Lukas shares every part of his journey — from doctor visits to post-surgery recovery — using his platform to make these experiences feel normal and approachable. His goal is to inspire others to take charge of their health and feel empowered along the way.

Through social media, Lukas has become a voice for people with rare conditions, promoting empathy and understanding. His openness serves as a reminder not to judge by appearances, while his message continues to uplift and connect a growing community.

At birth, Tomm Tennent stunned everyone — he had enough skin to cover a 5-year-old. Doctors were baffled, and his father was in shock. His life became a journey of challenges and resilience, but his transformation today is truly incredible.