Since he was 7 years old, Lukas Caldwell, now 18, has struggled to feel “normal” as he was diagnosed with Parry-Romberg Syndrome. The condition causes the skin and soft tissues on one side of his face to progressively deteriorate. This means that Lukas is gradually looking less and less identical to his twin brother, Ben, who does not have the same condition. Growing up, Lukas states that he “suffered with self confidence”, but the remarkable relationship between the competitive siblings brought solace to him, as Ben has been his “biggest support.” To the surprise of his schoolmates, Lukas started posting disease awareness videos on his TikTok account, amassing over 2 million followers. The high achieving teen, desires to just be himself and spread positivity in any way he can.
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00:00 I suffer from a rare condition called Perry-Romberg syndrome.
00:03 The rarity of my condition is around 1 in 100,000.
00:06 I've always struggled with self-confidence because obviously my condition makes my face
00:11 like not necessarily a normal looking face.
00:14 And it's been a struggle to feel normal.
00:17 The way other people treated me, it kind of caused me to be reserved, have some anxiety
00:21 when I was younger.
00:22 My brother has been my biggest support.
00:24 I wouldn't allow someone to make fun of my twin brother.
00:27 I posted my first video to TikTok and then it got like 500,000 views in a couple of days.
00:32 And that just made me realize that like I can do something with my condition.
00:36 My name is Lucas Caldwell and I'm 18 years old and I'm from Omaha, Nebraska.
00:41 And I suffer from a rare condition called Perry-Romberg syndrome, which is where the
00:44 soft tissue on half of my face is slowly deteriorating.
00:47 It first showed up when I was around six, but I wasn't really all that bad.
00:51 And then I went to the doctor when I was around seven and they ended up doing a biopsy and
00:56 diagnosing it.
00:57 So I got, was diagnosed when I was seven.
00:59 Perry-Romberg syndrome is an autoimmune disease, meaning that it's my own immune system that
01:03 got confused and attacked my face.
01:06 And really isn't, there isn't a whole lot known about it.
01:08 Like the cause isn't really known, like, and there are limited treatments for it.
01:13 The rarity of my condition is around one in 100,000.
01:17 So originally when I was first diagnosed, you could barely even tell.
01:21 But at this point, obviously it's a lot more sunken in and it's just been a gradual progression.
01:26 Like you can, like year by year, it doesn't look all that different.
01:30 But like, if you look when it first started, then like three years later, it looks the
01:33 same day.
01:34 The biggest challenge I faced with Perry-Romberg syndrome is accepting myself because it's
01:39 always been, I've always struggled with self-confidence because obviously my, my condition makes
01:44 my face like not necessarily a normal looking face.
01:47 And it's been a struggle to feel normal and feel like I fit in with other people when
01:52 obviously I'm not normal.
01:54 At school, definitely it was a common thing.
01:56 Like every once in a while you'd have some kid come up to you and accuse you of like
02:01 trying to get everyone sick when obviously that isn't really possible.
02:04 So my condition affected my confidence and anxiety by causing, it didn't really cause
02:09 me to feel bad about myself because you know, you don't carry a mirror around with you.
02:13 It's not something you notice all the time.
02:16 But other people, the way other people treated me, it kind of caused me to be reserved, have
02:20 some anxiety when I was younger.
02:23 So I always like to focus on schoolwork.
02:25 I think me and my brother made it into a kind of competition because like none of us wanted
02:29 to be the one that got the first B. So we would always just strive to strive for better,
02:33 like overlap each other.
02:34 And I think this ties into my condition by like, just so I know that I'm, I can achieve
02:39 anything that anyone else can.
02:40 I can achieve what my brother does.
02:42 It's like, even though I may look different on the outside, on the inside, I'm perfectly
02:46 capable.
02:47 My senior year I got an academic letter, actually I got an academic letter four years in a row
02:51 and I got 150 service hours, the President's Award, and I was on the academic wall of honor.
02:57 Then they actually did a story about me when I was a junior about my TikTok account.
03:00 This is actually my Eagle Scout award.
03:02 I earned my Eagle Scout in December and I've been a scout since I was probably seven or
03:07 eight and it's just been a long journey from there.
03:10 I finally ended up achieving it last year.
03:12 I would say the achievement I'm most proud of is just all the certificates laid out here
03:17 because it just shows that even though school may not have been like a place where I felt
03:21 welcome at all times, I still found a way to succeed and just be at the top of my class
03:27 year after year.
03:28 Even though like, it may not have been the easiest thing to achieve, I didn't let it,
03:32 didn't let my condition slow me down at all.
03:34 And my brother was in a lot of the same classes as me and that just made me feel a lot better
03:39 about my condition because I knew I had someone there to support me and I always just felt
03:43 like if anyone said anything to me, he would be there for me.
03:46 Me and Ben are identical twins, but obviously he doesn't have Perry Romberg syndrome and
03:49 I do.
03:50 I would say our relationship is very close.
03:52 We do spend a lot of time together because we live in the same house, all the same classes
03:56 at school, that kind of stuff.
03:58 And stuff we like to do together.
03:59 We like to play video games together.
04:01 We like to hang out with friends together.
04:03 We go to the gym together.
04:04 And sometimes we do homework together, whether or not, sometimes we write down what we each
04:09 other have, but you know, it's okay.
04:11 We do a lot of things together, like Lucas said, and we've just always been together.
04:15 It's like best friends by default, almost, you could say.
04:19 Even though we're twins, he's always been more into the academic side of things.
04:23 He was on the robotics team and the quiz bowl team.
04:25 Then I was more into the physical stuff.
04:27 I played football and baseball, but I'd say we're mostly similar for the most part.
04:32 Definitely, when people would come and ask me about his condition, I would always make
04:36 sure to be kind of protective and make sure they really understood what was going on because,
04:41 especially when you're a younger kid, people tend to make assumptions and stuff like that.
04:45 And I always just made sure people understood what was going on and that you could come
04:49 up and talk to him.
04:50 He was approachable and that there was nothing really to be afraid of when it came to his
04:53 condition.
04:54 He hasn't really experienced too much negativity recently, but in the past, I would definitely
04:58 defend him.
04:59 Of course, I wouldn't allow someone to make fun of my twin brother, obviously.
05:03 My brother has been my biggest support because he's always there for me when I kind of needed
05:07 help at school or if I felt like people were being mean to me, he was always there just
05:12 to make sure that I was okay and that nothing bad would happen to me.
05:16 I would say that my TikTok fame, people at school thought it was very unexpected because
05:20 I was the last person you'd expect to be having millions of followers on social media.
05:25 But overall, it's been a very positive response.
05:28 I've had people come up to me and say they really enjoy my videos.
05:31 The best video I've ever posted was my twin reveal, actually, because people were like,
05:35 "What's your brother look like?"
05:37 They wanted to see what I would look like normally, dare you say, and I just made a
05:41 video doing a twin reveal, showing him off, and it got 30 million views and 5 million
05:47 likes.
05:49 I think he's done a phenomenal job.
05:51 I would have never thought that TikTok would have been even a thing you could do, but he's
05:55 gone out and gotten 2 million followers and he's spread positivity about his face and
05:59 stuff and I would have never thought that that would have been possible, but I think
06:03 it's really something to admire about him.
06:06 So Peri-Rumberg Syndrome burns out on its own.
06:09 So my doctor, his plan was to contain it because there really is no cure.
06:14 So my condition actually wore itself out about 3 years ago.
06:18 I haven't taken any medication for it in about 3 years.
06:20 That has allowed me to move on to the next step of treatment, like braces, like planning
06:24 for surgery.
06:25 Instead of trying to make it stop progressing, we're now trying to correct what it has done.
06:30 So the surgery I'm getting is called an osteotomy.
06:33 We're going to make cuts on either side of my jaw and put implants in so it'll be level
06:37 because currently I can't really chew on this side at all and I do get occasional jaw pain
06:43 and they're just going to go in and fix the bone structure of my skull.
06:45 I'm hoping the surgery will help even out my bites and make it so I don't have any pain
06:50 anymore and make it so I can chew evenly on both sides of my mouth.
06:53 Want any cheese on them or are you just going to eat them like that?
06:56 I'll eat it like this.
06:58 Ben, you want cheese or are you going to eat it like that?
07:01 I'm going to chew on it like this.
07:02 Just like that?
07:03 All right.
07:04 I guess with his upcoming surgery, I'm feeling both excited and nervous all at the same time.
07:10 We've waited so long for this.
07:11 This is kind of our buying our time.
07:14 We've waited many years, so we are excited for him to see how this next part comes out.
07:23 I'm really excited to see how it turns out, but I'm always a little bit nervous with a
07:28 big medical procedure going for him, but I am excited to see how it turns out and I think
07:32 it'll be a good thing for him.
07:34 Lucas makes me most proud just how his courage that he's shown from when this whole thing
07:38 started up till now, just the courage that it took.
07:41 He's definitely taught me to definitely be confident in yourself and just be yourself
07:45 because he's always gone out and just been himself and spread positivity and I really
07:50 admire that about him.
07:51 A message I would give to others with Peri-Romberg syndrome is to not let your appearance define
07:56 you.
07:57 You are more than how you look.
07:58 I'm glad that I could have an impact on other people with conditions and self-esteem issues
08:02 that I can show my confidence and help them feel better about themselves.
08:05 My hopes for the future are to continue making videos, obviously recover from my surgery,
08:10 and just keep up doing well in the classroom in college.
08:12 Thank you.
08:15 [END]
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