Man with Parry-Romberg Syndrome Reveals How He Looks Today

Lukas Caldwell, a 20-year-old with Parry-Romberg syndrome, shares his journey living with this rare condition. He talks about its symptoms, treatments, and how his social media presence is raising awareness and supporting others. Let’s learn from his bravery.

Meet Lukas

Lukas was diagnosed with Parry-Romberg syndrome at just 7 years old. Now 20 and a college student from Nebraska, he’s a beacon of hope for those facing rare neurological diseases. With 3 million TikTok followers and 105K on Instagram, Lukas uses his platform to share his journey and raise awareness about living with a rare disorder.

Lukas’ journey began when his mom noticed discoloration on the right side of his face. After doctor visits and a biopsy, he was diagnosed with a rare neurological disorder causing the skin and soft tissues to deteriorate. PRS, as described by the NIH, leads to muscle, fat, and tissue shrinkage, often causing facial asymmetry. In Lukas’ case, it gradually changed the right side of his face.

PRS is a rare condition, affecting about one in 250,000 people, though exact numbers are unclear due to misdiagnoses. It typically affects one side of the face, but in rare cases, both sides can be impacted. The exact cause is unknown. Some believe it’s linked to an autoimmune response, while others suggest genetics. However, Lukas’ twin brother, Ben, doesn’t have the condition, hinting that genetics may not be the main factor and other triggers could be involved.

Lukas’ PRS journey was tough but heartfelt

Growing up, he faced teasing and misunderstanding from peers and even adults. Classmates called him "half face," and a cashier at Walmart once laughed at his appearance and asked, "What happened?" when he was just nine. Moments like these made him feel self-conscious and unsure of how to respond.

Amid the medical treatments and emotional struggles, Lukas found strength in his family, especially his twin brother Ben. Though unaffected by PRS, Ben’s presence gave Lukas a sense of normalcy and comfort. Seeing what he might have looked like without PRS motivated Lukas to keep pushing forward.

In high school, Lukas turned to social media to document his experience with PRS. A viral video using a symmetry filter on his face inspired him to share his journey daily on TikTok and Instagram. He discussed his struggles, treatments like jaw surgery and fat transfer, and the efforts to restore facial symmetry. These platforms became a space for Lukas to educate others about PRS and raise awareness of other rare diseases.

As Lukas’ following grew, so did his connection with others facing similar challenges. Followers shared their stories, forming a supportive community. Lukas encouraged self-acceptance and embraced differences, showing how these conversations can help heal both physically and emotionally.

Lukas has openly shared his PRS surgeries and recovery.

Lukas has openly shared his ongoing medical journey, including surgeries for PRS. He documents everything from doctor visits to recovery, normalizing discussions about medical procedures and promoting self-care. His goal is to inspire others to prioritize their health, no matter what challenges they face.

Through his advocacy, Lukas is raising awareness for PRS while promoting empathy for rare diseases. His message encourages kindness and reminds people not to judge based on appearance. By showing how social media can foster community and support, Lukas continues to inspire millions.