Though most times a bruise or scrape is just that, I think every mom worries in the back of their minds that it could be something worse. But if the internet has ever taught me anything, it is that if your mom intuition is flashing, follow it. When Lukas Caldwell was just 7 years old, his mother noticed a small patch of discoloration on the right side of his face and ultimately brushed it off. But when is started to spread, they went to a dermatologist.
Luckily, the doctor was thorough enough to take a biopsy. Lukas was officially diagnosed with Parry-Romberg syndrome, a rare autoimmune disorder that gradually destroys soft tissue on one side of the face.
“It was scary because I didn’t fully understand what was happening,” Lukas, 22, told People in an exclusive interview. “The feelings only hit me as the symptoms got worse.”
The condition affects about 1 in 250,000 people, and its rarity has made managing it a struggle. Lukas had access to the minimal treatment options that exist, which includes immunosuppressant medications, UV light therapy, and multiple surgeries.
The very visible disease didn’t just transform his appearance, which brought on a lot of stares and whispers from his peers. It also was fairly painful with a persistent cramping feeling. It made being social for him rather hard. For years, Lukas took respite from his twin Ben, who often helped him field awkward questions from friends and ensured he was always included.
@lukas.caldwell Happy Birthday Ben (and me) 🎉🎉
♬ 7 Years – Lukas Graham
“I felt powerless and afraid—something very strange was happening to my body that even doctors couldn’t fully explain,” Lukas admitted.
The medications he was on stunted his growth, making him shorter than his twin. But Lukas has never been envious of his twin and very much saw his struggles were his own with no one or anything to blame.
The most grueling part of living with the disease is all of the surgeries. Over the years, Lukas underwent several medical procedures to help restore his appearance and improve his quality of life. These treatments included jaw reconstruction surgery, fat grafting procedures, and a complex tissue transplant. He said the hardest was the double-jaw surgery that left him unable to eat solid food or speak for weeks.
@lukas.caldwell I have made substantial progress, but I still have a ways to go 😁
♬ Renee – SALES
“I also lost much of the feeling in my mouth, which lingered for months,” he adds. “But despite the pain, the surgery was life-changing—I could finally chew on the right side of my mouth, and my face looked more ‘normal.’”
The reconstructive surgery from the fat grafting, which also brought a tough recovery, significantly improved both his physical comfort and his confidence. By 2020, Lukas decided to bring his story to the masses via TikTok, where he has amassed over 3 million followers.
“By sharing my experiences honestly, I want to help normalize facial differences and show that it’s possible to thrive despite being visibly different. Even with challenges, life can be full and meaningful,” he told the magazine.
@lukas.caldwell PRS is not well studied, and what triggers the immune reaction is not entirely known.
♬ stellar (Slowed + Reverb) – .diedlonely & énouement
With his social media efforts, Lukas hopes to raise awareness for not just PRS but also for all rare diseases and to inspire empathy and understanding amongst his typically-abled followers.
“It’s okay to be different,” he proclaimed. “My experiences have shaped who I am and allowed me to be a voice for my community. I wouldn’t trade my journey for anything.”
In case you needed another reason to be impressed by this incredibly resilient human, Lukas recently made a huge announcement to his followers: He had been accepted into medical school!
@lukas.caldwell Thank you all for the continued support. I truly couldn’t have done this without you!
♬ Stories 2 – Danilo Stankovic
He has aspirations of becoming a doctor, which if you ask me, is so remarkable. Considering his life experience, I have full faith he will be the most empathetic, persistent, and vigilant doctor for his patients and his community.
