THESE people live with some of the rarest skin conditions in the world. Their skin is meant to protect them, but for these individuals, that hasn’t always been the case. What is it like to live with one of the rarest skin conditions in the world, like Epidermis Bullosa, or Scleroderma, or harder still, a skin condition that remains a mystery to doctors? How do they navigate the world with these rare conditions that are not only medically challenging but also make them look different?
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00:00These people live with some of the rarest skin conditions in the world.
00:05We have no idea what my condition is, what causes it, just no answers.
00:11Their skin is meant to protect them, but for these individuals that's not always the case.
00:15I don't really remember a time when there was actually nothing.
00:19What is it like to live with one of the rarest skin conditions?
00:23Or harder still, a skin condition that remains a mystery to doctors.
00:28The condition I have is unknown. Unknown.
00:31How do they navigate the world with these incredibly rare conditions,
00:35which not only affect them medically, but also make them look different?
00:39I don't like when people stare because I don't know what they're thinking about me and how I look.
00:46They've had to overcome a lot to be where they are today.
00:49What happens in the ICU stays in the ICU, man. Between me and him.
00:59New Yorker Shirley has created a whole new persona to help her deal with her diagnosis.
01:05I think my lowest point in life was probably when I was a child.
01:09I think as soon as I was diagnosed.
01:15At just nine years old, Shirley found out she had a rare condition known as scleroderma.
01:22The progression was so fast, it happened in a matter of weeks.
01:26It's a very complex disease, but it's an autoimmune disease that affects the connective tissues
01:31and it makes the skin very hard, like stone, from the inside out.
01:38I started showing symptoms when I was about the age of nine.
01:49After a couple of weeks, we found out it was scleroderma.
01:56We've always been together, you know, since growing up.
02:03She's always been like a dancing and always been like a ball of energy.
02:12I went from walking to using a walker and then a couple of months using a wheelchair.
02:19I remember sitting in a chair, I was very exhausted, and I looked at myself in front of a mirror
02:26and I asked, why me? Like, why is this happening?
02:30Like, what did I do to deserve this?
02:34And I just felt pity for myself.
02:38And after a few minutes, I was like, you know what? I'm going to snap out of it.
02:49And from that day forward, I changed my mentality.
02:54And I just decided to think positively and just go with it
02:59and make the most out of it every day, which is what I've done until today.
03:06Not letting her condition get the better of her, Shirley discovered her love of music, art and fashion
03:12as a way to express herself.
03:15It's true. I like a lot of black.
03:17When I was about 16 years old, I discovered goth.
03:25It matched my style, matched my personality.
03:31I look at fashion as an art form.
03:33I like to express myself, my mood with fashion.
03:36It's helped me a lot with my confidence.
03:39I didn't think I could dance or move that same way again.
03:42But I decided to embrace my limitations, even use my chair as a prop.
03:47And I began dancing with my sister without any fear.
03:54Shirley also created a character for herself to help her own and celebrate her differences.
04:00So the reason why I started the concept of the Tragic Doll was because
04:06I wanted to give myself a persona that I can be creative with.
04:11I always felt like I was trapped.
04:13You know, my soul was trapped in a foreign body.
04:17And so I thought the doll was the best concept of expressing how I feel living with scleroderma.
04:25I might be a little fragile looking.
04:27I might have porcelain-like skin, but I feel like there's this immense strength
04:33within myself.
04:35And I want to try to project that.
04:40I think I've gone through the worst in my life.
04:42That anything else is just microscopic.
04:53Your perspective is what really counts the most.
04:55And I always try to either, you know, be positive or act positive.
05:00I always try to either, you know, be positive or add some humor in my life.
05:10She's the reason why my life is so interesting.
05:14She's the reason why I love to dance.
05:18She's the reason why I'm into fashion.
05:22You know, she influenced me a lot with all these things.
05:26She is a wild thing.
05:28She is rebellious.
05:30And she is an amazing person.
05:33I think we have pain, and it's going to only build character.
05:36It's going to build your strength, I think.
05:42Life will never be perfect.
05:44It will never be a perfect path.
05:48Over the years, I think the Tragedy Doll helped me find a way to be more confident in my own skin.
05:54And accepting that there is alternative beauty.
05:57And showing people a different kind of beauty.
06:01And seeing beyond that.
06:0911-year-old Lucas has an unusually extreme version of his condition.
06:14I'd love to be a race car driver.
06:16What kind of cars?
06:18Chevy.
06:21Chevy and NASCAR, yeah.
06:23Third row, you got your straps okay?
06:25Awesome.
06:30I was born with this disease called giant congenital nevus.
06:36And that's what's all over me.
06:41Basically just a giant birthmark, that's all I can say about it.
06:45Giant congenital nevus is a dark-colored and often hairy patch of skin.
06:51I wonder who won, Kaylee?
06:53Giant congenital nevus, the stuff that I have, is one in every 500,000 kids.
06:58Very rare.
06:59Yeah, very rare.
07:02How do you feel about getting on the wall?
07:04Good.
07:05Yeah, haven't done that in a while, huh?
07:08Hopefully it won't hurt this.
07:10I don't think so.
07:11If you do feel any kind of strain or stretch, then just turn around and look at me.
07:17And be like, I'm coming down, alright?
07:20So it's basically a large mole.
07:22It starts the first 8 to 14 weeks in the womb.
07:26And it is not only on the outside of his body, but it's on the inside.
07:30So it covers his brain and some of his spine.
07:34No, no, I'm done.
07:40Here, I'll pull this down so you can pull your pants up a little bit.
07:44No, it was just hurting a little bit.
07:46Just hurting a little bit?
07:47That's why I was done.
07:48That's why I was done.
07:49You want to take a little break?
07:50Yeah, I'm just done.
07:52Did it hurt anything?
07:53Or just made it uncomfortable?
07:54It just made it uncomfortable.
07:56The main effects of giant congenital nevus would be NCM, which is the lesions in the brain.
08:04And so he also has hydrocephalus, which requires a VP shunt and to be monitored every 3 to 6 months.
08:12Hydrocephalus is a condition characterized by an abnormal buildup of cerebral fluid in the brain.
08:18I can get brain masses easier because I have basically nevus all over my brain.
08:25And then I got an airplane game too.
08:28Oh, my trail is like a pile of slush.
08:32It is, man. You made quite a few trails this year.
08:34Yeah.
08:36When Lucas was born, the doctors didn't know what he had.
08:41He basically looked charcoal burnt.
08:48It was definitely a struggle. Scary.
08:53When he came, yeah, he looked burnt.
08:55I mean, there's no other way to describe it.
08:58And so we were really confused and curious.
09:06Lucas was born with nevus.
09:13You're safe and healthy?
09:14Yeah.
09:15Thank you, Mommy and Daddy.
09:16You're welcome.
09:18Yeah, thank you Mom and Dad.
09:21I think school has been pretty good for him.
09:24We try to let him go and be as normal as possible.
09:27Although, since he's hit 6th grade, it seems to be a little bumpier.
09:31The classroom is a good place to have it.
09:33Mm-hmm.
09:36Hey, Skylar.
09:41What are you doing?
09:43I got a friend, Skylar, that comes over every day and hangs out with me
09:47and plays games and stuff, which is really nice.
09:50And he rides four-wheelers with me.
09:52Looking different has become increasingly difficult for Lucas.
09:56Are you?
09:57Yeah.
09:58He has dealt with bullying and name-calling.
10:01He doesn't deal with it well.
10:03He wants to retaliate.
10:05He doesn't understand.
10:07But he comes home and he talks to us about it, which is really great.
10:12Sometimes kids bully me.
10:15I don't know why, because I'm the same as everybody else.
10:18I just look different and stuff.
10:20And, yeah.
10:22Ever since he was born, people would always stare and look
10:26and wonder, it's horrible.
10:28It hurts.
10:29I think playing games with my family and friends and stuff
10:33is my own little world from school and stuff.
10:37We play a few hours a day, usually,
10:39and usually try and get some video capture or just try and have some fun.
10:44So Team Lucas is basically Lucas' social media hub.
10:48It's where we share all of our social media content.
10:52After his brain tumor, this is what I came home and built.
10:58We were sharing his story in hopes of inspiring others
11:03that normal, regular, everyday life is there for everybody to have.
11:07Oh, you're right there.
11:09No!
11:10Oh, I knocked you off.
11:14Dad, I can go behind here.
11:16Look, I can go behind here.
11:19I still ride my four-wheeler, play all my games and stuff
11:23like a normal kid would do.
11:26Every once in a while, I have roadblocks
11:30that basically just send me to the hospital or whatever, like this summer.
11:36I had a brain mass, and we caught it when it was very small, walnut-sized.
11:41The NCM can cause seizures, other brain tumors,
11:46other just consequences with the disease that he has.
11:52Which is the tumor that he had this summer.
11:56This is where the bookmark was.
11:59It knocked him on his behind pretty good.
12:03What happens in the ICU stays in the ICU, man, between me and him.
12:09But I'll tell you one thing.
12:12I'm glad he had his dad to pull and push.
12:17You know, he had that surgery on Monday, and we were back here on Friday.
12:22I'm just...
12:29Lucas is a strong-willed kid.
12:32He came out as a fighter, and I think he'll go out that way as well.
12:40We just enjoy every second with him.
12:42Maybe because of what's going on with him, or maybe not.
12:45I just see it as more of a reason to just live life
12:49and just to breathe that into him as much as we can.
12:53When I grow up, I want to be a race car driver.
13:01I just think it's really fun to just drive a car fast.
13:09It doesn't stop me from doing anything.
13:16Teen Sahana has one of the most deadly and painful skin conditions in the world.
13:24It's quite normal to wake up with quite a lot of blood on my pillow.
13:29I bleed a lot overnight just from sleeping.
13:35I don't really have any hair around here cos the skin comes off quite a lot.
13:46Oh no, that looks terrible. I'll just try this on.
13:52Normally there's always something hurting.
13:54Obviously I don't go around my daily life thinking that hurts,
13:58but I don't really remember a time when there was actually nothing hurting.
14:08Epidermolysis bullosa is a skin condition that
14:12causes the skin to lose its glue that holds it on.
14:18So that means that with friction, lots of the skin and all different parts of your body,
14:23including eyes and your mouth, can come off very easily.
14:32I have recessive dystrophic EP.
14:34Recessive dystrophic affects the eyes and the mouth and throat.
14:39So this means that I need to put eye drops in
14:42to make sure that my eye doesn't stick to my eyelid and then cause an abrasion.
14:47Her form of EB is very severe,
14:49meaning she'll be prone to aggressive and fatal forms of skin cancer.
14:56She is incredibly fragile and can get damaged very easily.
15:01In order to protect Sahana's skin from breaking every morning and night,
15:05her body needs to be bandaged.
15:10So it takes about one and a half hours to do dressings in the morning
15:13and then two in the evening.
15:16I think it takes longer in the evening because I've still been walking around,
15:21so I have more blisters on my feet.
15:24I normally wake up while mum's doing my dressings, like my arms and stuff.
15:30And what time do you wake up?
15:33About six.
15:35Yeah, about six o'clock.
15:36Sometimes it slips.
15:39We're always late for school.
15:41There hasn't been a day since Sahana was born
15:44that we haven't had to prick a blister.
15:47And I have to say that when I open up the packet and hear the crinkle,
15:51I think, oh, this means another blister to prick.
15:55But I can't imagine what that's like for Sahana,
15:57who hears that and knows that a needle's coming her way
16:01and there's nothing she's going to do.
16:04Yeah, so pricking blisters is one of the most painful parts of the dressing process.
16:09Like, blood blisters, they're very, just, it's awful.
16:12It's, like, very sick, isn't it?
16:14So it's very difficult.
16:15You have to prick them lots and lots of times.
16:17So that's painful.
16:19Sahana was born with EB.
16:21We didn't know it when she was born
16:23because she was completely normal-looking,
16:26apart from a very small patch of skin.
16:30But by the next morning,
16:31the skin had been rubbed off her ankles and her feet
16:35from the plastic tags that they put on at birth.
16:38And they gave us a very special pillow on discharge at the hospital.
16:43And she stayed on that pillow pretty much for six months.
16:50We were terrified to pick her up and do anything with her.
16:55So when I go outside, sometimes people will ask questions
16:58and, like, everyone stares a lot.
17:01When we're travelling and we go through security,
17:03once someone says, like, I can't go on the plane
17:05because I'm contagious, I'm like, no, I'm not, it's genetic.
17:08It's quite funny, in a way.
17:09It's just how I deal with the problems,
17:11I just see the funny side of it.
17:17Sahana was never able to have a normal life.
17:21She was never able to have a normal life.
17:24I was never able to, like, go to school,
17:26I was never able to go to school.
17:28And when I was 12, I went to school,
17:31but I was never able to go to school.
17:33I was never able to go to school,
17:35Sahana was never able to ride a bike, she can't really do sport, she's never really
17:43had the pleasure of climbing a tree or even running can be quite painful, she'll
17:49try and run but of course we didn't want her to fall over.
17:53Everything I can't do I kind of wish I could because obviously no one really likes to have those kind of limits.
18:00Hi, how are you?
18:02Thank you, how are you?
18:03Normally when I go out with my friends I just do normal things.
18:06When I spend time with friends we can just do anything that's just not sport basically.
18:12That was a lot of fun actually.
18:14It was.
18:15And we did get some work done.
18:16Not really but you know.
18:18Well actually we did.
18:19I don't know what you were doing.
18:20No I was trying to do that mask paper.
18:22Oh yeah.
18:23No we drew on it.
18:24You scared?
18:25I've known Sahana for 11 years I think since year one.
18:29Yeah.
18:31Before I knew Sahana I obviously could tell she had EB.
18:36I mean it's yeah.
18:38It's a secret.
18:39I don't think because we were so young I think we just grew up knowing this and it wasn't
18:45something that bothered us.
18:46I think when you're older and you see someone it might be a bit more shocking but to us
18:50it was just one of our friends and that was just who she was.
18:55Aww.
18:56I remember what I said but it was so fun.
19:00There is currently no cure for EB and up until recently the amount of money spent on research
19:06was minimal.
19:07But her parents began raising money for research before setting up a charity called Cure EB
19:13dedicated to finding treatments and eventually a cure.
19:17In the space of time that we've been fundraising we've managed to raise over five million pounds
19:23for EB research which is good but quite frankly it's not enough.
19:29I don't think just because a treatment isn't a cure it doesn't mean it shouldn't be still
19:36pursued because it can improve the lives of people with the condition so much.
19:41EB causes painful blisters that need to be pricked with a needle.
19:44Please play EB pop for Cure EB to make the blister stop.
19:48Oh my god.
19:50I don't think you ever really get completely used to pain.
19:56So for example even if you experience something every day it's not going to hurt.
19:59It's just, it's not really surprising for me.
20:02I think obviously because physically I'm quite different to most people but like mentally
20:06I'm probably the same.
20:09I think I admire Suhana's humour, resilience, ability to just get on with life despite everything
20:18that's thrown her way.
20:20She has an amazing ability to find enjoyment in all the things she can do without focusing
20:27too much on what she can't do.
20:36Like Suhana, Kiana has one of the most severe cases of her condition.
20:41When I was born I popped out and I had a birthmark.
20:45Kiana has a Port Weinstein birthmark.
20:49It's located on my face, left side, neck, chest area.
20:54I have a patch on my back and also on my scalp.
21:01What a Port Weinstein birthmark is, is the blood vessels are dilated and that's why
21:06I get the colour.
21:08My birthmark really should have been treated at a much younger age with laser treatment
21:13but in those days, that's like 1978 I was born.
21:17No one knew what the hell a Port Weinstein birthmark was really.
21:20They had a name for it but in terms of treatment, there was no treatment.
21:25As a result, I'm not having any treatment on my face.
21:29The birthmark just continues to grow.
21:31What really affects me is health-wise, I have this mysterious fever and swelling that affects
21:40my birthmark.
21:41It's extremely, extremely painful.
21:43I have pretty much no hearing in my left ear.
21:48With such a visible condition, Kiana's had to get used to the attention that comes from
21:53looking different.
21:57People stare at me when I leave the house.
21:59When people just stare and they stare and they stare, that's just being rude.
22:05I mean, I'm a human being.
22:07I can see that you're looking at me.
22:09I think my mother has definitely had something to say to a few people about their reactions
22:15to me.
22:16I remember her coming home once and telling me how a woman made a sign of the cross while
22:22she was traveling with her.
22:23I don't think it affects her as much now as an adult as it did when she was much younger.
22:28The birthmark affected my childhood.
22:31I was always usually the last child to be picked for sports.
22:36I didn't make too many friends.
22:39I was called a lot of names.
22:41I was called Prune Face, Purple Face.
22:45One that was really popular was the Purple People Eater.
22:55In school, Kiana was quiet.
22:58She more or less kept to herself, not much socializing.
23:02She, you know, had very few friends.
23:06I stood up for Kiana back then.
23:08So when people would probably ask, I would tell them,
23:11oh, it's just a mark. It's not contagious.
23:13Nothing will happen to you if you touch her or you interact with her or anything like that.
23:18So I treat her like a normal person.
23:20The turning point for me to just accept my birthmark was the fact that I kept being teased
23:24and that there was no way my birthmark could disappear.
23:28It was always going to be there and the teasing was always going to happen.
23:34Having my family be supportive has really helped a lot. It's cool.
23:38She's able to be in society as a human being, like a normal human being,
23:45because I've always tried to emphasize with her,
23:48it is what is inside you that matters, not your external appearance.
23:53Kiana's birthmark continues to grow as she ages, causing her complications.
23:58I have had a total of five surgeries on my birthmark.
24:02The first two were the most critical.
24:07I mean, I was 36 years old and that was my first surgery.
24:13Before my surgery, my face felt so much heavier.
24:16The effort just to talk, it was really, really tough.
24:22And every time I talked, I used to drool as well.
24:25Sometimes I would feel the blood just running and pumping through my birthmark.
24:30So I do not have that weight anymore.
24:33I'm able to speak better. I do not drool anymore, which is fantastic.
24:39And I must say it has helped my confidence.
24:42Although I look cocky already, but it boosted my confidence a lot more.
24:48Kiana's confidence has improved a lot, more so after the surgery.
24:52I think I have seen her confidence level boost a whole lot more since then.
24:58I am a global ambassador for the Vascular Birthmark Foundation.
25:03And what I do is that I help to create awareness for birthmarks.
25:08so the Vascular Birthmark Foundation, and what I do is that I help to create awareness
25:15for birthmarks, and I do this via my blog, and pretty much anybody that I meet who asks
25:22me what do I have on my face, because awareness is so critical, even in this world of modern
25:28technology there's still so many doctors who don't know what a birthmark is.
25:33I am quite proud of myself to be able to talk to people and put myself out there.
25:40I am unable to really say in words how proud I am of her, I'm exceptionally proud of her
25:48now being a global ambassador for the Vascular Birthmark Foundation, that to me is a great
25:55achievement.
25:56I have a set of my birthmark, I have it there, I'm not going to say I'm perfectly happy
26:02with it because I don't love it, but it's there.
26:05I don't want my whole life to focus on the fact that I have a birthmark.
26:10I don't want that to keep me back from enjoying life.
26:14To know that I can help somebody who also has a birthmark, it feels like this is what
26:19I'm meant to be doing.
26:23Brazilian-born Corinne might live in a city known for its beautiful urban beaches, but
26:28due to her incredibly rare condition, she must do her best to avoid the sunlight at
26:33all costs.
26:58Zero Derma Pigmentosin is a rare genetic condition that causes extreme sensitivity
27:10to the sunlight.
27:29At first, it was just a few spots on the skin, there were no lesions or tumors.
27:34Then, when I was 8 years old, the first lesion started to show up, which was...
27:40So, I went to get that biopsy, those x-rays, right, everything that needs to be done.
27:45And there, the doctor found that it was cancer.
27:48So, there were always lesions.
27:53Among the many operations Corinne has had to have as a result of her condition, this
28:10included one to remove her lower lip and the tip of her nose, due to melanomas.
28:22Because there are so many of them, there's no way to remove them all at once.
28:27They come off one by one, giving priority to those with tumors, those that are bothering me.
28:40I've never had...
28:43It's a normal life.
28:47Due to her condition, she has to stay away from the sun as much as possible, meaning
28:51most days, she stays indoors, with the curtains closed.
28:54Otherwise, the effects of her condition could continue to get even more extreme.
29:03In August of last year, I had a surgery.
29:09And in this surgery, the doctor found out that the lesion I was going to have in the surgery
29:16was no longer superficial, right?
29:22The doctor said it was a type of cancer that had cut through my head.
29:29And I was going to have to undergo a very delicate surgery, with a very slow and painful
29:36procedure.
29:40So, in the midst of the dismay, I opened up on my social media and told my followers
29:50what was going on.
29:53So, I'm going to need your support.
29:56Sincerely, guys.
29:58He already told me that it's a surgery that requires a lot of care, medications,
30:03healing materials.
30:05As long as I'm alive, I'm going to keep fighting.
30:08Because as long as there is life, there is hope.
30:11And there, they made a campaign for me at the time, to help me.
30:15They made a small donation.
30:17In less than 24 hours, they got the goal of the campaign, of the donations they asked for in the campaign.
30:24After recovering from the surgery to remove the cancer from her skull,
30:27Karine realized people had donated more than she needed for her treatment.
30:32And as I don't have this habit of going out, my life is more inside the house.
30:38I felt very suffocated, even being inside the house.
30:43So, I had a dream of having a bigger place, to feel freer, to have a better quality of life.
30:53Through the campaign, the money that was collected, I bought this house.
31:01Through Karine's social media presence, documenting her journey with XP,
31:05she met Ed, who saw her story and reached out to her online.
31:12When they began posting about their relationship, they received a lot of negative reactions,
31:17as many questioned whether their relationship was real or not.
31:22There are a lot of good people, but there are also a lot of bad people.
31:28I learned that the mistake is not in me, it's in that person.
31:33I do what I do, and I just feel good by her side.
31:37I do good to her and she does good to me too.
31:40What is the thing you like the most that we do together?
31:43What is it, love?
31:45It's going out, going for a walk.
31:47It's going out. It's not something that happens very often,
31:50but we really like to have that moment just for us.
31:55So it's something I really like to do whenever I can.
31:58Sunscreen, long hair.
32:11Despite the many hardships she faces due to her condition,
32:15Karine and Ed make the most of the life they are able to lead with one another.
32:20What we want for the future is a better quality of life,
32:25both financially and in terms of my health,
32:30so that my problems can be resolved,
32:33and so that we can be financially stable,
32:37so that we can achieve our dreams.
32:42In Florida, a 13-year-old was born with a skin condition so rare,
32:47he's yet to be diagnosed.
32:50Hi, my name is Elliot, and when I grow up,
32:53I would like to be a professional gamer or a professional chef.
33:03I grew up, so I'm short for my age.
33:08I hear faster than usual.
33:11During my pregnancy, everything was absolutely fine,
33:14but when he was born, it was a surprise,
33:17not just for us, but for the doctors as well.
33:22They said that what he had was cystic fibrosis.
33:26They ran some tests, and that I should start preparing,
33:29so me and his father, we should start preparing for his funeral,
33:32that he wouldn't last his first year.
33:35We said he's going to make it through this,
33:38and 13 years later, he's here.
33:49Well, there was no prognosis.
33:51Everything has always been a guessing prognosis,
33:56and until this day, Elliot still has not been confirmed.
34:00They've come up to closest thing as far as
34:03Ichthyosis Syndrome, Netherton Syndrome.
34:10Ichthyosis is a condition where the body produces skin cells too quickly
34:14and lose the protective barrier that keeps moisture in the skin.
34:18I would love for them to just come up with a name
34:20and just diagnose him with something,
34:22so that he has a proper diagnosis.
34:27So that he has a proper name for his condition.
34:34Even if it's rare, it's one in a million.
34:37He doesn't have all the layers of skin that we do.
34:41Like, for instance, if he falls down and he needs stitches,
34:47he's actually healed within 24 hours.
34:51So he hasn't really had the necessity to have stitches
34:56because his skin, it's always reproducing,
34:58so it heals really, really, really quick.
35:01When you get hurt, how fast do you heal?
35:04Do you want to tell them a little bit about that?
35:06I have a screwdriver, and I was riding it,
35:09and we were going down a bridge,
35:11and I didn't know how steep it was,
35:15and I lost control, and I busted my knee and my arm,
35:19as you can see here.
35:21And it was healed within three days, right?
35:26Completely healed.
35:28No stitches?
35:29No stitches.
35:30She gave me antibiotics.
35:34With Elio's regimens on a daily basis,
35:37he has to take his bath.
35:38It takes about 20 to 30 minutes.
35:41Scrub all his dead skin off.
35:43So we put his Vaseline every two to three hours on him,
35:46or depending on how the weather is, he'll get dry faster.
35:52We put his mineral oil on him to keep his body oiled and creamed,
35:56which doesn't help because then he can't really go outside
35:59because the sun will burn him even more with the oil.
36:02So we always put long sleeves on him, protective gear.
36:06We always put a hat on him to protect him from getting burnt.
36:12The Vaseline gets stuck on his clothes and on his hat,
36:15and it's really hard to wash off because of the consistency in the oil.
36:19So we're always buying him clothes, always getting him hats.
36:26Probably spend almost about $200, $300 a month just in clothing for him.
36:33Due to how his condition affects his appearance,
36:36Elio has been the target for bullies.
36:39I've been told to kill myself.
36:42I've been told to just leave, go somewhere else.
36:47I've been called ugly. I've been called animal.
36:51I've been called tomato. I've been called, oh, my God.
36:55You know what this girl called me? She called me a disabled.
36:58She said, get out of here, you handicapped.
37:03There are people making fun of him because he smells strong,
37:07because it's dead flesh, so it smells really bad.
37:10And they tell him, you stink.
37:13There have been situations where he's been on the bus,
37:16and the bus, he got kicked off of the bus
37:18because the kids kept complaining about how he smelled.
37:22I don't really care anymore.
37:24I mean, I've gotten used to it to the point where it doesn't matter
37:28if they say mean stuff to me.
37:31Six and sevens break my limbs, but roads don't hold me, you know?
37:34Can we get those potatoes? Can we get those?
37:38My sister Yasmin, she doesn't like when kids mess with me.
37:43I was like his bodyguard at school, you know, whenever a kid was picking on him.
37:47People reject things that are different, you know?
37:50They don't know what it's like to be in his position
37:53and to be born with a condition.
37:59Elio is very charismatic.
38:01He is very hyper. He's very energetic.
38:04He's very social. He's a sweet kid, you know?
38:07He's just had the rough end of life,
38:10and it's been hard, but he's sweet.
38:14He's my little brother. He's my baby.
38:22He sees you. He's not dumb.
38:24He knows that you're talking about him.
38:26That's not cool.
38:28There is people that are different.
38:31We're all different races, different colors,
38:34blue eyes, brown eyes, you know?
38:38We're all different, but we're all humans.
38:40We all have feelings. We all have emotions.
38:43We all have a heart.
38:45So we all need to understand that
38:48even though we look different, we're still human.
38:52We shouldn't hurt each other's feelings that way.
38:59Still waiting for a diagnosis for her mystery condition,
39:02Nancy's skin condition has some baffling symptoms.
39:06It appeared, like, here first.
39:09In this part of my face, it feels like needles
39:13constantly stabbing my face.
39:15Then as it gets more further up,
39:17it feels more bruising and more like a headache,
39:21and down here just aches all the time.
39:25She was about 11 the first time she had a flare-up.
39:29It started on her lips.
39:31They really swelled, went bright red, like blistery.
39:34Why is it getting too big?
39:36We took her straight to the GP,
39:38and they thought it was an allergic reaction to something,
39:41but she hadn't eaten anything different, anything strange,
39:44and that's how it all started.
39:46As it became more regular, yes, I did get worried,
39:49cos the reactions got worse and worse as time went on.
39:53We have no idea what my condition is, what causes it.
39:57I've had so many tests, so many, like, scans,
40:00everything, blood tests done, been on so many medication,
40:03and we just don't know. There is no name for it at the moment.
40:08Having a diagnosis would just give us all a bit of peace of mind.
40:11It's an incredibly weird condition.
40:14You know, you just never know when it's going to happen.
40:17Never knowing when or why her skin flares up
40:19has been difficult for Nancy to come to terms with.
40:24Yay! I love my life. I love my skin.
40:29I've not found any medication that works or helps,
40:32and no treatments that we know of.
40:37It definitely affected my confidence as a teenager,
40:40growing up, and almost all eyes on me sometimes,
40:45and then I just didn't want to go out.
40:50I did used to cover that up with this foundation
40:53that's made for covering tattoos for, like, movies and stuff,
40:57and then as it got worse, covering up just made it more visible.
41:03And I just decided I didn't want to cover it any more.
41:09I started posts on TikTok in 2019.
41:13Some of the best comments I get is when people tag their friends
41:17and say, like, oh, she's so pretty or, oh, she's so inspiring.
41:20But when I started getting so many messages from people saying,
41:24oh, you've helped me with my acne,
41:26you've helped me with so many different things, not even skin-related,
41:29that's when I decided, oh,
41:30I could really make something of my platform and what I have.
41:35I definitely lose a few followers every time that my skin flares up.
41:39Since my face came up the other day, I've literally lost 5K followers.
41:43I can't help but think it's because I look like this.
41:48I've had people say stuff about me being, like, a burn victim
41:52or things like that.
41:53A lot of people say, have your family hurt you?
41:56Reactions are definitely a lot more negative online.
41:59People say whatever they want.
42:03It makes you feel upset for her because she doesn't need to go through that,
42:07especially when she gets stared at down the street.
42:10She doesn't need to feel more upset about just stupid comments from people.
42:15Today, I'm going to be filming a TikTok with Tilly
42:18and she's going to read out hate comments.
42:21Camo print.
42:22Yeah, those ones are so regular.
42:24Camo print, pizza face, things like that.
42:26Just knocks your confidence a bit.
42:30At the start, my confidence would go down when I'd get a nasty comment.
42:34Now, I don't even blink an eyelid at it.
42:37The worst comment I've got, stuff like, kill yourself,
42:41things like that, like, really bad things.
42:46They like to get a rise out of me.
42:48So that's why I just delete the comment, block them.
42:53I hope to inspire people to learn to love themselves a bit more
42:57and my biggest thing is to make people stop being so horrible to other people
43:03when they just see one 15-second video of their life.
43:06I love her TikTok. I think it's really, like, just a fun thing to do.
43:10It's been amazing to, like, see her come to terms
43:13with such an understandably hard thing,
43:15and also be able to, like, embrace it just for what it is.
43:19TikTok has been a massive help, I suppose.
43:21It's almost like a therapy.
43:24I think it's also helped Nancy realise
43:27that there's a lot more nice people out there than there are horrible.
43:31I'm always worried about what people are saying
43:34and I have read some of them, and I have to stop
43:37because I wouldn't deal with it like Nancy does.
43:40But I love the way that she's turned it into something that's fun.
43:44She's turned it into something positive.
43:46My flare-ups make me who I am.
43:49It doesn't bother me what it looks like anymore,
43:52but if they went away tomorrow and never came back,
43:55I definitely wouldn't miss them.
44:01Looking different has been a huge barrier for James.
44:04I have a skin condition called vitiligo, which destroys your skin.
44:08James has non-segmental vitiligo, an autoimmune disease
44:12where the immune system destroys the cells in the body
44:15that produce melanin, causing loss of pigment and colour in the skin.
44:19It's not life-threatening and it's not contagious.
44:22It's just skin.
44:23I developed vitiligo at the age of 18 months old as a baby.
44:26I was asking my mum, what's wrong with me?
44:28My mum always used to reassure me, nothing's wrong with me.
44:31I kind of grew up just saying it was a birthmark or a beauty mark.
44:34Overnight, my skin just started to change.
44:36We were trying to get some answers,
44:38and I remember her just taking me to a specialist
44:41and they wanted to kind of do these light treatments,
44:43which is like these ultralights, and we found out that it was vitiligo.
44:50Take the weights.
44:51My mum loved me no matter what,
44:53but I felt like the rest of the world didn't understand vitiligo at the time.
44:56It was always the question, what happened to your face?
44:58Were you burnt? Were you in a fire?
45:01Because my self-esteem was so shattered, I was just empty inside.
45:04No one ever asked me what was my name, how I'm doing.
45:09Instead, they always asked me what was on my face,
45:12and it made me sad as a kid.
45:14I didn't even realise I was different until society started pointing out these things.
45:17Wow, look at your skin. Look at your face, man.
45:20How come you're different? Is it contagious?
45:23I felt like the world didn't accept me.
45:26The world didn't see me who I really was.
45:29It made me feel like I don't belong in this world.
45:33I felt like an outcast.
45:36Vitiligo put a toll on my life.
45:40I grew up thinking that what I seen in the mirror or my reflection was a monster.
45:46It was just like a scary feeling, man.
45:48I wish no one would go through that.
45:50It became like a conflict within myself.
45:52So I decided one day to look in the mirror.
45:55I had to be like the age of seven to really look in the mirror.
45:58And that's the first day that I actually gave myself that stamp of approval.
46:02And it felt really good.
46:03And every day I would show up and look in that mirror
46:05and reassure myself that nothing is wrong with me.
46:08Growing up with vitiligo, I didn't have no real representation.
46:11It kind of made me want to change that narrative.
46:14I wanted to show up for others.
46:16Growing up with such negativity surrounding his appearance,
46:20James decided he wanted to change the narrative.
46:23Six, seven years ago, I started That Vitiligo Guy.
46:26That was my ghostwriter handle where I would just put up these daily vlogs on positivity.
46:31The biggest lesson that I learned was it don't matter what color you are,
46:37what shape or size you are.
46:39What's important is what's in the heart.
46:41Society's perception can just change your look and how you feel and how you view yourself.
46:47Take a step back.
46:49Because it all starts with you.
46:51Start viewing yourself as you are.
46:54Because at the end of the day, it's always going to be you versus you.
46:57I'm just getting ready.
46:59I'm shooting up to my mom's house, checking on her, see how she's doing.
47:03My mom helped me in so many ways.
47:05Even at this age, I probably would have still seen this monster
47:08if I didn't have the mother that I had in my life.
47:11That's my superhero.
47:13She always told me that I'm no different than anyone.
47:16She always brought the best out of me.
47:18She always included me in pictures.
47:20She never looked at my vitiligo as a disability or as disadvantaged.
47:25She treated me as if I was like my brother or my sister.
47:36Hey.
47:37Hey, Mommy, how are you? Good to see you.
47:39What's up?
47:40So, how did it go yesterday?
47:42It went really well. I was DJing upstate.
47:44Went to school, did two presentations there with my first book, The Boy Behind the Face.
47:48It was a great turnout.
47:49Kids really enjoyed that, the staff, the administration, the principal.
47:53Three years before I became an author,
47:55I wanted to go into the school system to educate people on vitiligo
47:59just to bring this conversation around inclusivity, diversity, and acceptance.
48:04So I decided to write a book, The Boy Behind the Face,
48:07and it's about a boy named James, which happened to be me.
48:10I wrote this book for kids who's at the early age to kind of give this message,
48:14just a simple message, treat others the way you want to be treated.
48:17I am proud of James being an author,
48:19and I am such a proud mother of the man that he has come
48:24and where he's at right now and where he's going,
48:27and I know it will be great.
48:30I'm working on a new book currently, The Man Behind the Face.
48:33I've just been in the process of really putting this content together,
48:36but I'm super excited about it,
48:37and I'm going to actually share some of my life experience.
48:40It's almost 100% completed.
48:42I think I'm going to shop it around. I might just self-publish it.
48:45It's going to just change so many different people's outlook on life,
48:49and I'm just so excited.
48:50I just wanted to share that with you.
48:52Being that great person that you are and that I instilled in you,
48:56you treat people the way you want to be treated,
48:58and you will go a long way, and God will appreciate it.
49:04The most proudest thing that I accomplished and that I'm happy with,
49:07I took the chance on me.
49:08I believed in me, and I didn't give up.
49:10Look at me. I could have played that victim, but I didn't play that victim.
49:14That's what I'm so proud of.
49:16The reality is, I chose the right path of being positive, living with vitiligo.
49:21It turned me into who I am now.
49:24Vitiligo has shaped me to show up for others,
49:27but most importantly, to find that inner self-love.
49:45I'm
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