Teen uses social media to document rare disorder that causes face to waste away
Lukas Caldwell is a 19-year-old college student with nearly 3 million followers on TikTok and Instagram.
Caldwell, a Nebraska native, uses his social media platform to shed light on a rare disease he has battled for more than a decade: Parry-Romberg syndrome.
Caldwell told "Good Morning America" that when he was around age 7, his mom noticed some discoloration on his right cheek.
A visit to a dermatologist's office and a skin biopsy led to the life-changing diagnosis of Parry-Romberg syndrome, a rare condition in which the skin and soft tissues on the face slowly deteriorate and waste away, according to the National Institutes of Health.
In most cases, the condition starts in childhood and progresses over a period of several years. It typically only affects one side of the face.
There is currently no known cause and no cure for Parry-Romberg syndrome, according to the NIH.
Caldwell said for him, the condition "slowly progressed" over the course of about six years, causing the right side of his face to atrophy.
"The gradual change over time is just something that's hard to get used to," Caldwell, who has a twin brother, told "GMA." "I looked very different at age 8 than I did at 10, not just because I was growing and developing. It was just my condition progressing, and the gradual difference you would see is just something that's hard to get used to."
He said the syndrome was also difficult for him emotionally, as he dealt with people's reactions to his appearance as a child.
"Living with Parry-Romberg syndrome definitely is a lot different than 'normal people,' how they live, because you're treated differently by others based on your appearance," he said. "Whether you like to recognize it or not."
At the age of 13, Caldwell said he entered what is known as the "burnout period," a period of "no active disease," according to the Children's Hospital of Philadelphia.
Most doctors wait until a patient reaches the burnout period before starting treatment, according to CHOP.
Caldwell said his doctors wanted him to wait until the age of 18 to undergo plastic surgery in order to let his face fully develop.
Around two years ago, while in high school, Caldwell said he saw a trend on social media of people using a symmetry filter on their faces. He tried it and when his video went viral with hundreds of thousands of views, Caldwell began posting daily about his experience with Parry-Romberg syndrome.
"It just showed me that I can do something with my condition," Caldwell said. "I've just been doing it ever since, just posting, keep gaining followers and spreading awareness."
Parry-Romberg syndrome is estimated to affect around one in 250,000 people, but the exact number of people with the condition is not known due to misdiagnoses, according to Boston Children's Hospital.
With his videos on Instagram and TikTok, Caldwell shows what life is like with Parry-Romberg syndrome for the millions of people who may have never heard of or seen someone with the condition.
"It's important to spread awareness for these kinds of conditions because just in the medical field, these conditions don't receive very much funding or treatments," he said. "What I've learned is just step one to boosting the amount of money and attention that these things get is just people knowing about it."
Starting last year, Caldwell also began documenting his treatment journey, showing his followers as he got braces and underwent jaw surgery.
In May, Caldwell underwent a three-hour surgery during which he had fat extracted from his stomach and transplanted into his face. He showed his followers everything from the appointments leading up to the surgery to his recovery in the weeks since.
Caldwell said the plan is for doctors to repeat the surgery in six months to one year to continue filling out his face.
"When it comes to [...] facial reconstruction, they have to go one step at a time," Caldwell said. "They would do it all at once if they could, but they just can't."
Caldwell added that it's likely he'll have multiple additional surgeries ahead of him, which he plans to continue to document on social media.
He said the message he hopes to share with his followers is one of less judgment and more understanding.
"The biggest thing I want people to take away is that you shouldn't judge others based on their appearance," he said. "Something I've come to realize is that everyone knows something that you don't, and that's just so valuable."
Editor's note: This was originally published on July 21, 2023.
