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 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
00:22 when I was younger.
00:23 My brother has been my biggest support.
00:24 I wouldn't allow someone to make fun of my twin brother.
00:28 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 I can do something with my condition.
00:37 My name is Lucas Caldwell and I'm 18 years old and I'm from Omaha, Nebraska and I suffer
00:41 from a rare condition called Perry-Romberg syndrome, which is where the soft tissue on
00:45 half of my face is slowly deteriorating.
00:48 It first showed up when I was around six, but it wasn't really all that bad.
00:51 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 was diagnosed when I was seven.
01:00 Perry-Romberg syndrome is an autoimmune disease, meaning that it's my own immune system that
01:04 got confused and attacked my face.
01:06 And really there isn't a whole lot known about it.
01:09 Like the cause isn't really known 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, but at this point,
01:22 obviously it's a lot more sunken in and it's just been a gradual progression.
01:27 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
01:34 same day.
01:35 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 condition makes my face
01:44 like not necessarily a normal looking face.
01:48 And it's been a struggle to feel normal and feel like I fit in with other people when
01:53 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.
02:05 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, but the way other people treated me, it kind
02:18 of caused me to be reserved, have 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 for better, like
02:33 overlap each other.
02:35 And I think this ties into my condition by like, just so I know that I can achieve anything
02:39 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,
02:52 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.
03:01 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
03:08 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
03:22 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.
03:29 Even though like it might not have been the easiest thing to achieve, I didn't let it,
03:33 didn't let my condition slow me down at all.
03:35 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.
03:42 And I always just felt 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.
04:00 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.
04:05 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 We're kind of 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.
04:26 And 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.
04:46 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
05:21 I was the last person you'd expect to be having millions of followers on social media.
05:26 But overall, it's been a very positive response.
05:29 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.
05:41 And I just made a video doing a twin reveal, showing him off.
05:44 And it got 30 million views and 5 million likes.
05:48 And yeah.
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
05:56 gone out and gotten 2 million followers and he's spread positivity about his face and
05:59 stuff.
06:00 And I would have never thought that that would have been possible, but I think it's really
06:04 something to admire about him.
06:07 So Peri-Rembrouck Syndrome burns out on its own.
06:09 So my doctor, his plan was to contain it because there really is no cure.
06:15 So my condition actually wore itself out about three years ago.
06:18 I haven't taken any medication for it in about three years.
06:21 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 They're going to make cuts on either side of my jaw and put implants in so it'll be
06:36 level because currently I can't really chew on this side at all.
06:41 And I do get occasional jaw pain and they're just going to go in and fix the bone structure
06:45 of my skull.
06:46 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?
06:55 I'll eat it like this.
06:57 Ben, you want cheese or are you going to eat it like that?
07:01 I'm going to chew on them like this.
07:02 Like that, alright.
07:03 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.
07:12 This is kind of our buying our time.
07:14 We've waited many years so we're 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, you're so much more than how you look.
07:58 I'm glad that I can 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.
08:06 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 and college.
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