Nebraska native Lukas Caldwell enjoyed a happy, carefree childhood with his twin brother Ben, but everything changed when the boys turned six.
Lukas Caldwell, now 19, started seeing a group of doctors at that age after his parents noticed a “worrying” discoloration on his face. A year later, he was diagnosed with a rare condition in which the soft tissues in the face slowly atrophy.
His diagnosis, Parry-Romberg syndrome, affects only one in 250,000 people. Over time, muscles and fat in the face shrink, while bones can thin and change shape.
The condition may not shorten a person’s life, but it can be painful, as Mr Caldwell confirmed, saying he suffered from facial pain, cramps, poor eyesight and migraines, on top of ridicule from classmates who teased him and called him ‘half face’.
Lukas Caldwell has had four different surgeries to repair the damage to his face, while also communicating with his nearly three million Tik Tok followers about rare diseases and the value of self-acceptance.
Lukas Caldwell, now 19, was diagnosed with the rare Parry-Romberg syndrome when he was seven after his parents noticed that much of his face was discolored. As a child, he was relentlessly teased by classmates and even adults alike
PRS may have a basis in genetics, but scientists aren’t sure. Lukas’ twin brother Ben does not have PRS, suggesting that a genetic link may not be as strong
Mr. Caldwell’s ordeal began in the first decade of his life, the period when a diagnosis of Parry-Romberg syndrome (PRS) is most common. His pediatrician assumed the noticeable discoloration on the right side of his face was superficial.
But a dermatologist familiar with the condition knew what to look for, performed a biopsy, and diagnosed it.
It was the beginning of years of medical treatments and surgeries that disrupted a normal childhood with his twin brother not sharing the condition.
Mr Caldwell said: ‘I have had countless different treatments for PRS. When I was in third grade, I had to leave school twice a week to revive UV therapy at a dermatology clinic.
“Around that same time, I left school several times a week to receive intravenous steroid drip.”
He’s also had two reconstructive procedures, jaw surgery “to correct the height of my jaw and let me chew on both sides of my mouth,” Mr Caldwell said, and fat transfer surgery to restore symmetry to his face.
All the while his confidence had been seriously damaged.
Mr Caldwell said: ‘I struggled with severe anxiety and low self-esteem as a result of my condition. These were issues that weren’t that important prior to my diagnosis.
“I’ve kind of outgrown these tendencies and I try to stay positive. However, it’s not always easy.’
And while Mr. Caldwell got the medical care he needed, he often felt alienated by his classmates who bullied him.
He said: ‘I used to be bullied a lot when I was younger, the other kids call me ‘half face’. They would also insult my appearance and call me ugly, which caused me to develop fears and insecurities that I still deal with.”
But the bullying was not confined to the classroom. Mr. Caldwell told of a time when he was nine and standing in the checkout line of a Walmart when the cashier “started laughing at me.”
Lukas Caldwell has had several surgeries to repair the atrophied tissue and bone in his face. One of the surgeries was on his jaw so he could chew food on the right side of his face.
The scan of Mr. Caldwell’s face highlights the deformity there caused by the deterioration of soft tissue and muscle there
He added: “She said my face looked funny and she asked me what happened. I didn’t really know how to handle this situation at the time, so I didn’t say anything to her.’
Sharing his journey with more than 2.9 million Tik Tok fans has given him comfort, said Caldwell, along with his brother Ben, whom he called “one of my strongest supporters.”
And far from arousing jealousy at being spared the rare condition, Mr Caldwell said Ben’s unaffected face gives him some comfort as it “serves as a reminder of what I might have looked like if I didn’t have PRS.”
PRS usually affects the left side of a person’s face and affects girls more often than not. But Mr. Caldwell’s case has hit the right side of his face, making it difficult to chew food on that side.
In even rarer cases, PRS can affect both sides of the face.
The cause of the condition is shrouded in mystery. Some in the medical field believe the condition is a product of the immune system attacking itself and damaging the soft tissues in the face.
The condition may also be genetic, although the fact that Lukas’ twin brother does not share the diagnosis suggests that may not be the strongest determinant.
Doctors have also posited that the facial atrophy may be due to decreased blood flow to the tissues on one side of the face, leading to their degeneration.