Content Creator Lukas Caldwell (19) from Nebraska USA has amassed a ticktock following of 2.9 million people and is stopped in the street by admirers asking for selfies and his autograph, but early life was tough for this brave young man. Lukas enjoyed a happy childhood with his twin brother Ben, until he turned six, when his parents noticed a worrying discoloration to his face. In particular, they saw intense sunlight appeared to cause the discoloration to become more noticeable.  At the age of seven Lukas was taken to see medics and he was diagnosed with a rare skin condition called Parry Romberg Syndrome. Parry-Romberg syndrome is a rare, acquired disorder characterised by slow, progressive shrinkage (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy). The condition affects around one in 250,000 people in the US. The exact cause of Parry-Romberg syndrome is unknown. Lukas has had to endure the taunts of cruel bullies and rounds of painful and distressing reconstructive surgery, but he has not let the condition beat him. He has harnessed the power of social media to raise awareness about the syndrome and the importance of facial positivity. “The symptoms of PRS include facial pain, cramps, poor vision, migraines, skin discoloration, soft tissue deterioration, and seizures. I was lucky to never experience a seizure,” said Lukas.  “During my yearly checkups when my condition was first starting to become visible, my paediatrician assumed my condition was just mild discoloration that was no cause for concern.  “My case was still in its early stages at this time, so this wasn't really that bold of an assumption. “The dermatologist I saw had actually seen other patients with PRS, so she was quickly able to recognise what I had. Just to make sure, she performed a skin biopsy. “I have received numerous 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 this same time, I left school several times a week to receive IV steroid infusions.  “I have had two reconstructive surgeries, a jaw surgery and a fat transfer surgery. The jaw surgery was done to correct the level of my jaw and allow me to chew on both sides of my mouth. “The fat transfer was performed with the purpose of making my face look more symmetrical. This procedure will need to be done several more times to get the desired result.” The severity and specific symptoms of Parry-Romberg syndrome are highly variable from one person to another. Additional symptoms can potentially develop in some people including neurological abnormalities or abnormalities affecting the eyes or teeth.  Parry-Romberg syndrome usually becomes apparent during the first decade of life or early during the second decade. “I can do 99% of activities exactly the same as a "normal" person. I do have slight difficulties chewing food, and my appearance does impact my confidence, but I learned to adapt,” said Lukas.  “The biggest change that resulted from my diagnosis is my self-confidence. “I struggled with severe anxiety and low self esteem due to my condition. These were issues that were not as impactful prior to my diagnosis. “PRS has affected my confidence by causing me to have low self esteem and social anxiety when I was younger.  “I have outgrown these tendencies to some degree, and I try to stay positive. However, it is not always easy.  “I was often bullied when I was younger, the other kids would call me names like "half face." They would also insult my appearance and call me ugly, causing me to develop anxiety and insecurities which I still deal with today.” “The strangest interaction I have ever had due to my condition was when a cashier at Walmart made fun of my face.  “I was around nine at the time, and while I was standing in the checkout line at Walmart, the cashier started laughing at me.  “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. Because Lukas has an identical twin not affected by the condition, he believes it is a good indicator his PRS is not genetic, his twin brother Ben is a huge source of support to him.  “Considering I have an identical twin brother who does not have PRS, I am inclined to believe that the genetic factor, if there is one, probably isn’t very strong,” he said.  “I have received immense support from my family and friends. Specifically, my brother has really helped me to make friends and feel included.  “Having an identical twin serves as a reminder for what I could have looked like if I did not have PRS. I find this fact more interesting than depressing.  “My brother has been one of my strongest supporters, and I see no reason to be sad about what could have been.  “I have accepted how I look, so my twin having a "normal" face does not upset me.  “I also received support from my fans on social media. I have had people come up to me in public and ask for a picture and autograph.  “These interactions let me know that I am making a difference.  “I was bullied in elementary and middle school, but this stopped once I reached high school.” Lukas has amassed a following of 2.9 million people on TikTok sharing his journey and raising awareness for rare diseases. “The biggest thing that helped me through my rare disease journey was learning to accept myself,” said Lukas.  “It is important to recognise that there are some things about us that we cannot change.  “There is no point in worrying about things that are outside of our control.” ENDS