These people live with some of the rarest skin conditions in the world
We have no idea what my condition is, what causes it, just no answers
Their skin is meant to protect them, but for these individuals, that's not always the case
I don't really remember a time when there was actually nothing. What is it like to live with one of the rarest skin conditions
Or harder still, a skin condition that remains a mystery to doctors
The condition I have is unknown. I know. How do they navigate the world with these incredibly rare conditions
which not only affect them medically but also make them look different
I don't like when people stare cause I don't know what they're thinking about me and how I look
They've had to overcome a lot to be where they are today. What happens in the ICU stays in the ICU
man, between me and him. New Yorker Shirley has created
a whole new persona to help her deal with her diagnosis. I think my lowest point in life was probably when I was a child
I think as soon as I was diagnosed. At just 9 years old
Shirley found out she had a rare condition known as scleroderma. The progression was so fast
it happened in a matter of weeks. It's a very complex disease
but it's an autoimmune disease that affects the connective tissues and it makes the skin very hard like stone from the inside out
I started showing symptoms. When I was um about the age of 9
After a couple of weeks, we found out it was scleroderma. We're
always together, you know, since growing up. She always been like a dancing and always been like a ball of
energy. I went from walking to using a walker and then a couple of months using a wheelchair
I remember sitting in a chair. I was very exhausted and I looked at myself in front of a mirror and I asked why me
Like, why is this happening? Like what did I do? To deserve this
And I just felt pity for myself. And after a few minutes
I was like, you know what? I'm gonna snap out of it. And
from that day forward, I changed my mentality and I just decided to think positively and just go with it and make the
most out of it every day, which is what I've done until today. Not letting her condition get the better of her
Shirley discovered her love of music, art and fashion as a way to express herself
It's true. I like a lot of black. When I was about 16 years old
I discovered goth Matched my style matched my personality. I
look at fashion as an art form. I like to express myself I rode with fashion
It taught me a lot with my confidence. I didn't think I could dance or move that same way again
But I decided to embrace my limitations, even use my chair as a prop
and I began dancing with my sister without any fear. Shirley also created a character for herself to help
her own and celebrate her differences. So the reason why I started the concept of the tragic doll was because I wanted to
give myself a persona that I can be creative with. I always felt like I was trapped
you know, my spirit, my soul was trapped in a foreign body
and so I thought the doll was the best concept of expressing how I feel living with scleroderma
I might be a little fragile looking. I might have porcelain like skin
but I feel like there's this immense strength. Within myself and I wanna try to project that
I think I've gone through the worst in my life that anything else is just microscopic
Your perspective it's what really counts the most, and I always try to either
you know, be positive or add some humor in my life. She's
the reason why my life is so interesting she's the reason why I love to dance she's the reason why I'm
into fashion. You know she influenced me a lot with all these things she is wild thing
She is rebellious and she is an amazing person. I think you have pain and it's gonna only build character it's gonna build your strength
I think. Life will never be perfect. It will never be a perfect path
Over the years I think the Trajan doll helped me find a way to be more confident in my own skin and accepting that there
is alternative beauty and showing people a different kind of beauty and seeing beyond that
11 year old Lucas has an unusually extreme version of his condition
I'd love to be a race car driver. What kind of cars? Chevy
Chevy NASCAR, yeah. Third row. You got your straps, OK? Awesome, a professional
I was born with this disease called giant congenital nevus. And that's what's all over me
Basically just a giant birthmark, that's all I can say about it. Giant congenital nevus is a dark colored and often hairy patch of skin
I wonder who won, Kayle. Giant in general, the stuff that I have is 1 in every 500,000 kids
Very rare, very rare. How do you feel about getting on the wall
Yeah, haven't done that in a while, huh. Hopefully it won't hurt this
I don't think so. Just take if you, if you do feel any kind of strain or stretch
then just turn around and look at me and I'm coming down
right. So it's basically a large mole. It starts the 1st 8 to 14 weeks in the womb
and it is not only on the outside of his body, but it's on the inside
so it covers his brain and some of his spine. No, no
I'm done. Here, I'll pull this down so you can pull your pants up a little bit
No, it was just hurting a little bit. It's hurting a little bit. That's why it was done
You wanna take a little break? Yeah, I'm just done. The main effects of giant congenital
nevus would be NCM, which is the lesions in the brain. And so he also has hydrocephalus
which requires a VP shunt and to be monitored every 3 to 6 months
Hydrocephalus is a condition characterized by an abnormal buildup of cerebral fluid in the brain
I can get brain masses easier because I have basically nevus all over my brain
And then I got an airplane game too. Oh, my trail looks like a pile of slush
It is, man. You made quite a few trails this year. Yeah, good job
When Lucas was born, the doctors didn't know what he had. He basically looked charcoal burnt
It was definitely a struggle, um, scary. When he came, yeah, he
he looked burned. I mean, uh there's no other way to describe it
And so we were really confused and curious. Yeah
thank you, mommy and daddy. Hey, you're welcome. Yeah, thank you, Mom and dad
I think school has been pretty good for him. We try to let him go and be as normal as possible
although since he's hit 6th grade, it seems to be a little bumpier
Glass is a good place to have it. Mhm. Hey Skyler. Uh
what are you doing? I got a friend Skyler that comes over every day and hangs out with me and plays games and stuff which
is really nice and he rides 4 wheelers with me. Looking different has become increasingly difficult for Lucas
Are you? He has, uh, dealt with bullying and name calling. He doesn't deal with it well
He, he wants to retaliate. um, he doesn't understand and but he comes home and he talks to us about it
Which is really great. Sometimes kids bully me. I don't know why because I'm the same as everybody else
I just look different and stuff. And yeah. Ever since he was born
people would always stare and look and wonder. It's horrible. It hurts
I think playing games with my uh family and friends and stuff is my own little world from school and stuff
We play a few hours a day usually and uh. Usually try and get some video capture or just try to have fun
So Team Lucas is basically um Lucas's social media hub. It's where we show all share all of our social media content after his
uh, brain tumor. Uh, this is what I came home and built
We were sharing his story in hopes of inspiring others that normal
regular everyday life is there for everybody to have. Oh, you're right there
No, I, oh, I knocked you off. Yeah, I can go behind here
Look, I can go behind here. I still ride my four wheeler play all my games and stuff like a normal kid would do just
every once in a while I have roadblocks. That basically just send me to the hospital or whatever like this summer
I had a brain mass and we caught it when it was very small walnut size
The NCM can cause seizures, um, other brain tumors, other just consequences with the disease that he has
Which is the tumor that he had this summer. This is where the bookmark was
It knocked him on his behind, pretty good, um. What happens in the ICU stays in the ICU
man, between me and him. But uh I'll tell you one thing
um, I'm glad he had his dad pull, pull and push, you know
uh, he had that surgery on Monday and we're back here on Friday. I'm just Lucas
is a strong-willed kid. He came out as a fighter, and I think he'll go out that way as well
We just enjoy every second with him, maybe because of what's going on with him or maybe not
I just see it as more of a reason to just live life and just to breathe that into him as much as we can
When I grow up I want to be a race car driver. I just think it's
really fun to just drive a car fast. It doesn't stop me from doing anything
Teen Sahana has one of the most deadly and painful skin conditions in the world
It's quite normal to sort of wake up with quite a lot of blood on my pillow
I bleed a lot overnight just from. Sleeping. I don't really have any hair around here cos the skin
comes off quite a lot. Oh no, that looks terrible. I'll just try to
And Normally there's always something hurting. Obviously I don't just go around my daily life thinking that hurts
but I don't really remember a time when there was actually nothing
Sahana has epidermolysis biosa or EB. Epidermolysis glosa is a skin condition that sort
of causes the skin to lose its glue that sort of holds it on
So that means it was friction, lots of the skin and all different parts of your body
including like eyes and your mouth can come off very easily. I have recessive
dystrophic EV. Recessive dystrophic affects the eyes and the mouth and throat
So this means that I need to put eye drops in to make sure that my eye doesn't stick to my eyelid and then cause
an abrasion. Her form of EB is very severe, meaning she'll be prone to aggressive and fatal forms of skin cancer
She is incredibly fragile, um, and can get damaged very easily. In order to protect Sahana's skin from breaking every morning and night
her body needs to be bandaged. So it takes about 1.5 hours to do dressings
in the morning and then 2 in the evening. I think it takes longer in the evening because I've still been walking around
so my blisters on my feet. I normally wake up while mum's doing my dressing
so like my arms and stuff. And how what time do you wake up
About 6. Yeah, about 6. And start at about 6:30. Um, sometimes it slips
so we're always late for school. There hasn't been a day since Sahanna was born that we haven't had to prick a blister
and I have to say that when I open up the packet and hear the crinkle
I think, oh, this means another blister to prick, but I can't imagine what that's like for Sahana who hears that and knows that a
needle's coming her way and there's nothing she's gonna be able to do to really escape having it done
so. Yeah, so prison blisters is one of the most painful parts of the dressing process
Like blood blitters so they're very just top it's like very sick isn't it
so it's very difficult so you have to prick them lots and lots of times, um
so that's painful. Sohana was born with EB we didn't know it when she was born because she was completely normal looking
apart from a very small patch on her neck, um, but by the next morning the skin had been rubbed off her
Ankles and her feet from the plastic tags that they put on at birth
And they gave us a very special pillow on discharge at the hospital
and she stayed on that pillow pretty much for 6 months. We were terrified to pick her
up and do anything with her. So when I go outside, sometimes people
ask questions and like everyone stares a lot. When we're traveling we go through security once someone says I can't go on the plane because
I'm contagious, I'm like I'm not it's genetic. No I. I
It's quite funny in a way, it's just how I deal with the problems
I just see the funny side of it. So was never able to ride a bike
She can't really do sport. She's never really had the pleasure of climbing a tree or even running
can be quite painful. She'll try and run, but of course we didn't want her to fall over
Everything I can't do, I kind of wish I could because obviously no one really liked to have those kind of limits
Hi, how are you? Normally when I go out with my friends, I just do normal things
When I spend time with friends, we can just do anything that just not sport basically
That was a lot of fun actually. It was, and we did get some work done
I'm sorry. Not really, but you know, we, well, actually we did. No
I was trying to do that maths paper. And then we drew on it instead
I've known Sahana for 11 years, I think, since year one. Yeah
Before I knew Suhana, I obviously could tell she had EB. I mean it's yeah it's a secret
I don't think because we were so young, I think we just grew up knowing this and it wasn't something that bothered us
I think when you're older and you see someone, it might be a bit more shocking
but to us it was just one of our friends and that was just. Who she was I remember what I said but it was
so fun. There is currently no cure for EB and up until recently
the amount of money spent on research was minimal. But her parents began raising money for research before setting up a charity called Cure EB
dedicated to finding treatments and eventually a cure. In the space of time that we've been fundraising
we've managed to raise over £5 million for eB research, which is good
but quite frankly, it's not enough. I don't think just because a treatment isn't a cure
it doesn't mean it shouldn't be proceed because it can improve the lives of people with the conditions so much
EB causes painful blisters that need to be pricked with a needle. Please play EB Pop for Curie B to make the blisters stop
Oh my god. I don't think you ever really get completely used to
Pain, so for example, even if you experience something every day, it's not gonna hurt
it's just, it's not really surprising for me. I think obviously because physically I'm quite different to most people but like mentally I'm probably the
same. I think I admire Sahana's humor, resilience, ability to just get
on with life despite everything that's thrown her way. She has an amazing ability to find enjoyment in all
the things she can do without focusing too much on what she can't do
Like Suhana, Kiana has one of the most severe cases of her condition
When I was born, I popped up and I had a birthmark
Kiana has a Port wine stain birthmark. It's located on my face
left side, neck, chest area. I have a patch on my back and also on my scalp
What a plot Weinstein birthmark is, is the blood vessels are dilated
and that's why I get the color. My birthmark um really should have been treated at a much younger age with laser treatment
But in those days, that's like 1978 I was born. No one knew what the hell a Po Weinstein birthmark was really
They had a name for it, but in terms of treatment, there was no treatment
As a result, I'm not having any treatment on my face. The birthmark just continues to grow
What really affects me is health wise, I have this mysterious. Fever and swelling that affects my birthmark
is extremely, extremely painful. I have pretty much no hearing in my left ear
With such a visible condition, Keanu's had to get used to the attention that comes from looking different
People stare at me when I leave the house, when people just stare and they stare
and instead, that's just being rude. I mean, I'm a human being. I
I can see that you're looking at me. I think my mother has definitely had something to say to a few people about their reactions
to me. I remember her coming home once and telling me how a woman made a sign of the cross while she was traveling with
her. I don't think it affects her as much now as an adult as it did when she was much younger
The birthmark affected my childhood. I was always usually the last child to be picked for sports
I didn't make too many friends. It was called a lot of names
I was called Prune Face, Purple Face. Uh, one that was really popular was the Purple People Eater
In school, piano was quiet. She more or less kept to herself
not much socializing. She, you know, had very few friends. I stood up for Kiana back then
So when people will probably ask, I will tell them, Oh, is there a mark
it's not contagious. Nothing will happen to you if you touch her, you interact with her or anything like that
So I treat her like a normal person. The turning point for me to just accept my birthmark was the fact that I kept being
teased and that there was no way my birthmark could disappear. It was always going to be there and the teasing was always gonna happen
I Having my family be supportive has has really helped a lot to cope
She's able to be in society as a human being, like a normal human being because I've always tried to emphasize with
her, it is what is inside you that matters, not your external appearance
Guyana's birthmark continues to grow as she ages, causing her complications. I have have a total of 5 surgeries on my birthmark
The first two, were the most critical. I mean, I was 36 years old and that was my
first surgery, but before my surgery, my face felt so much heavier
The effort to just to talk and it it was really really tough
and every time I talked I used to drool as well. It's like having this huge one inch steak
the weight of it on your face. Sometimes I would feel the blood just running and pumping through my birthmark
So I do not have that weight anymore. I'm able to speak better
I do not drool anymore, which is fantastic. And I must say it has helped my confidence
although a little cocky already, but it it it boosted my confidence a lot more
Kiana's um confidence has improved a lot more so after the surgery
I think I have seen her confidence level boost a whole lot more since then
I am a global ambassador to the Vascular Birthmark Foundation, and what I do is that I help to create
awareness for birthmarks, and I do this via my blog, and pretty much anybody that I need to ask me what do I have on
my face. Cause awareness is so critical. Even in this world of modern technology
there's still so many doctors who don't know what a birthmark is. I am quite proud of myself to be able to talk to people
and put myself out there. I am unable to really say in words how proud I am of her
I'm exceptionally proud of her now being a global ambassador for the vascular Birthmark Foundation
That to me is a great achievement. I have set my birthmark
I have it is there. I'm not gonna say I'm perfectly happy with it because I don't love it
But it's the, I don't want my whole life focused on the fact that I have a birthmark
I don't want that to keep me back from enjoying life. To know that I can help somebody who also has a birthmark
That it feels like this is what I'm meant to be doing. Brazilian born Kain might live in a city known for its beautiful urban
beaches, but due to her incredibly rare condition, she must do her best to avoid the sunlight at all costs
and do theoso cafe. I
don't deco is one also. In town, uh, condo
entreans if we jano chicado conchero denoingozo. Zeroderma pigmentosum is a rare genetic condition that causes extreme sensitivity
to the sunlight. Er con ultrat into tan era non caga teguscuadindo I know is clico
sta coquenala sagia graducazo. None
none to mosa. Intake
is is
a tao era in jizos in jams. Among the many operations Coin has had to have as a result of her condition
this included one to remove her lower lip and the tip of her nose due to melanomas
So OK, so no con uh shira to do you want here easily cos I don't createidanielski stoner chiku
naenddumoris uh ktown ninonga. I the. And
was it the was it the long out? Due to her condition
she has to stay away from the sun as much as possible, meaning most days
she stays indoors with the curtains closed. Otherwise, the effects of her condition could continue to get even more extreme
Mm, I go to the casado. Uh, slugs uh could just grizon slug
jaques. Leofakieron chiujician casacus Dangecade yoyete
casa slug to delica the eonoquerato lauidoloroso. To uh queso
contekita contest. After
recovering from the surgery to remove the cancer from her skull, Coin realized people had donated more than she needed for her treatment
Ionsai and the the the
kaza zaka the zaza. In gangaoli of the er conida jingo. is
Through Coin's social media present documenting her journey with XP she met Ed
who saw her story and reached out to her online. When they began posting about their relationship
they received a lot of negative reactions, as many questioned whether their relationship was real or not
That is queso is now. You are playing GQA shakke
so. something to be. Yeah
Uh, I know I also singer. Despite
the many hardships she faces due to her condition, Corin and Ed make the most of the life they are able to lead with one
another. tag
Yeah. That In Florida, a 13 year old was born with a skin
condition, so rare he's yet to be diagnosed. Hi, my name is Elliot
and when I grow up, I would like to be a professional gamer or a professional chef
I just got good though I, I'm short for my age. And uh like I hear faster than usual
During my pregnancy and everything was absolutely fine, um, but when he was born
it was, it was a surprise, not just for us, um, but for the doctors as well
They said that what he had was cystic fibrosis and ran some tests and that I should start preparing so me and his father we
should start preparing for his funeral that he wouldn't last his first year. We said he's gonna make it through this and
um 13 years later he's here. Well
there was no prognosis. Everything has always been a guessing. Prognosis and till this day
Elio still has not been completely diagnosed with any condition. Um, they've come up to closest thing as far as ichthyosis
syndrome, um Netherson syndrome. Ithyosis is a condition where the body produces skin cells too quickly and lose the protective barrier
that keeps moisture in the skin. I would love for them to just come up with a name and just diagnose him with something so
he has a proper Uh, name for his condition. Even if it's rare
it's 1 in a million. Um, he doesn't have all the layers of skin that
um, we do, um, like for instance, um, if he falls down and he needs stitches
um, he's actually healed within 24 hours. Yeah, so, um, he hasn't really had the necessity to have stitches
um, because his skin, it's always reproducing so it heals really, really, really quick
When like you get hurt, how fast do you feel? You want to tell them a little bit about you
I have a scooter and I really I was riding it and we were going down a bridge and
I didn't know how stupid it was, and I lost control it and I dusted my head knee and my head as you can see
here, and it was here within 3 days, right. Completely healed. No stitches
No stitches. Nope, she gave me antibiotics. With Elio's regimens on a daily basis
um, he has to take his bath, takes about 20 to 30 minutes, um
scrub all his dead skin off. So we put his Vaseline every 2 to 3 hours on him or depending on how the weather is
he'll get dry faster. We put his mineral oil on him to keep his body oiled and cream
which doesn't help because then he can't really go outside because the sun will burn him even more with the oil
So we always put long sleeves on him, protective gear, we always put hat on him to protect him from getting burned
The Vaseline gets stuck on his clothes and on his hat, um
and it's really hard to wash off because of the consistency in the oil
so, um, we're always getting, uh, always buying him clothes, um, always getting him hats
um, probably spend almost about 200 to $300 a month just in clothing for him
Due to how his condition affects his appearance, Elio has been the target for bullies
I've been told to kill myself. I've been told to just leave
go to somewhere else. I've been quite ugly. I've been quite an
I've been loud tomato, I've been clad, and I go, you know what this girl called me and she called me a disced
She said, get out and feel you handicapped. The people making fun of him because he smells strong
because it's dead flesh, so it smells really bad and they tell him you stink and um situations where he's been on the bus and
the bus, he got kicked off of the bus because the kids kept complaining about how he smelled
I don't really care though. I mean, I've gotten used to it to the point where it doesn't matter if they say mean stuff to
me. 6s and stones break my hands where the roads don't hold me
you know, we put those. So my sister Yasmin, she doesn't like when kids mess with me
She doesn't she hates it. I was like his bodyguard at school
you know, whenever a kid was picking on him. People reject things that are different
you know, they don't know what it's like to be in his position and to be born with a condition
Elio is very charismatic. He is very hyper he's very energetic he's very social
he's a sweet kid, you know, um, he's just had the rough end of life and it's um it's been hard but he's he's sweet
he's my little brother he's my baby. He sees you, he's
not dumb, and he knows what you're talking about him. That's not cool. There are people that are different
Um, we're all different races, different colors, blue eyes, brown eyes, you know
um, we're all different, but we're all humans, we all have feelings, we all have emotions
um, we all have a heart, so we all need to understand that even though we look different
we're still human. And we shouldn't hurt each other's feelings that way
Still waiting for a diagnosis for her mystery condition, Nancy's skin condition has some baffling symptoms
It appeared like here first. In this part of my face, it feels like needles constantly stabbing in my face
and then as it gets more further up it feels more bruising and more like a headache and down here just aches all the time
She was about 11 the first time she had a flare up
It started on her lips, they really swelled, went bright red, like blistery
Why is it getting too big? We took her straight to the GP and they thought it was an allergic reaction to something
but she hadn't eaten anything different, anything strange. And that's how it all started
As it became more regular, yes, I did get worried cos the reactions got worse and worse as time went on
We have no idea what my condition is, what causes it. I've had so many tests
so many like scans, everything, blood tests done, been on so many medications
and we just don't know, there is no name for it at the moment. Having a diagnosis would just give us all a bit of
peace of mind. It's an incredibly weird condition. You know, you just never know when it's gonna happen
Never knowing when or why her skin flares up has been difficult for Nancy to come to terms with
Yeah, I love my life. I love my skin. Um, I've not found any medication that works or helps and no
treatments that we know of. It definitely affected my confidence as a teenager growing up and almost
all eyes on me sometimes and then. I just didn't want to go out
I did used to cover that up with this foundation that's made for covering tattoos for like movies and stuff
And then as it got worse, covering up just made it more visible. And I just decided I didn't want
to cover it anymore. I started posting on TikTok in 2019. Some of the best comments I get is when
people tag their friends and say like, oh she's so pretty or oh she's so inspiring
But when I started getting so many messages from people saying, oh
you've helped me with my acne, you've helped me with so many different things, not even skin related
that's when I decided, oh, I could really make something of my platform and what I have
I definitely lose a few followers every time that my skin flares up
Since my face came up the other day, I've literally lost 5K followers. I can't help but think it's because I look like this
I've had people say stuff about me being like a burn victim or things like that
A lot of people say, have your family hurt you? Reactions are definitely a lot more negative online
People say whatever they want. It makes you feel upset for her because she doesn't need to go through that
especially when she gets stared at down the street, she doesn't need to feel more upset about just stupid comments from people
Today I'm gonna be filming a TikTok with Tilly and she's gonna read out hate comments
Camo print. Yeah, those ones are so regular, camo print, pizza face
things like that, just, Knocks the confidence a bit, but at the start
my confidence would go down when I'd get a nasty comment. Now I don't even blink an eyelid at it
The worst comment I've got stuff like kill yourself, things like that
like really bad things. They like to get a rise out of me
So that's why I just delete the comment, block them. I hope to inspire people to learn to love themselves a bit more and my
biggest thing is to make people stop being so horrible to other people when they just see 115 2nd video of their life
I love her TikTok. I think it's really like just a fun thing to do
It's been amazing to like see her come to terms with such an understandably hard thing to come to terms with and also be able
to like embrace it just for what it is. TikTok has been a massive help
I suppose. It's almost like a therapy. I think it's also helped Nancy realize that there's a lot more nice people out there than there
are horrible. I'm always worried about what people are saying, and I have read some of them
and I have to stop cos I wouldn't deal with it like Nancy does
But I love the way that she's turned it into something positive. My flare-ups make me who I am
It doesn't bother me what it looks like anymore, but if they went away tomorrow and never came back
I definitely wouldn't miss them. Looking different has been a huge barrier for James
I have a skin condition called vitiligo, which destroys your skin. James has non-segmental vitiligo
an autoimmune disease where the immune system destroys the cells in the body that produce melanin
causing loss of pigment and color in the skin. It's not life threatening and it's not contagious
it's just skin. I developed Vitiligo at the age of 18 months old as a baby
I was asking my mom what's wrong with me. My mom always used to reassure me nothing's wrong with me
I kind of grew up just saying it was a birthmark or a beauty mark. Overnight my skin just started to change
We was trying to get some answers, so I remember her just taking me to a specialist and they wanted to kind of do these
light treatments which is like this archer lights, and we found out that it was vitiligo
Take the weights. My mom loved me no matter what, but I felt like the rest of the world didn't understand Vitiligo at the time
It was always the question what happened to your face? Were you burned? Were you in a fire
Because my self-esteem was so shattered. I was just empty inside. No one ever asked me what was my name
how I'm doing. Instead they always asked me what was on my face
And it made me sad as a kid. I didn't realize I was different to society started pointing out these things
Wow, look at your skin. Look at your face, man. How come you're different
Is it contagious? I felt like the world didn't accept me. The world didn't see me who I really was
It made me feel like I don't belong in this world. I felt like an outcast
Fiddle I go put a toll on my life. I grew up thinking that what I seen in the mirror on my reflection was a
monster. It was just like a scary feeling, man. I wish no one to go through that
It became like a conflict within myself, so I decided one day to look in the mirror
I had to be like the age of 7 to really look in the mirror, and that's the first day that I actually gave myself
that stamp of approval, and it felt really good and every day I would show up and look in that mirror and reassure myself that
nothing is wrong with me. Growing up vitiligo, I didn't have no real representation
It kinda made me want to change that narrative. I wanted to show up for others
Growing up with such negativity surrounding his appearance, James decided he wanted to change the narrative
6-7 years ago I started that vitiligo guy, and that was my ghostwriting handle where I would just put out these daily blogs on positivity
The biggest lesson that I learned was it don't matter what color you are
What shape or size you are. What's important is what's in the heart
Society's perception can just change your look and how you feel and how you view yourself
Take a step back. Cause it all starts with you. Start viewing yourself as you are
because at the end of the day, it's always gonna be you versus you. I'm just getting ready and shooting up to my mom's house
checking on her, see how she's doing. My mom helped me in so many ways
even at this age, I probably would have still seen this monster if I didn't have the mother that I had in my life
That's my superhero. She always told me that I'm no different than anyone
She always brought the best out of me. She always included me in pictures. She never looked at my vitiligo as a disability or as
disadvantaged. She treated me as if I was like my brother or my sister
Hey, hey, mommy how are you? Good to see you. What's up? So how did it go yesterday
It went really well. I was DJing upstate, went to school, did two presentations there with my first book
The Boy Behind the Face. It was a great turnout. Kids didn't really enjoy that the staff
the administration, the principal. Three years before I became an author and I wanted to go into the school system to educate people on vitiligo
just to bring this conversation around inclusivity, diversity, and acceptance, so I decided to write a book
The boy behind the face and it's about a boy named James which happened to be me
I wrote this book for kids who's at the early age to kind of give this message just a simple message treat others the way
you wanna be treated. I am proud of James being an author and I am such a proud mother of the man that he had
come and where he's at right now and where he's going, and I know it'll be great
I'm working on a new book currently, The Man Behind the Face. I've just been in the process of really putting this content together
but I'm super excited about it, and I'm gonna actually share some of my life experience
It's almost 100% completed. I think I'm gonna shop it around. I might just self-publish it
It's just gonna just change so many different people's outlook on life
and I'm just so excited. I just wanted to share that with you. Being a great person that you are and that I instilled in
you, you treat people the way you want to be treated and you will go a long way and God will appreciate it
The most proudest thing that I accomplished and that I'm happy with, I took the chance on me
I believed in me and I didn't give up. Look at me. I could have played that victim
but I didn't play that victim. That's what I'm so proud of. The reality is I chose the right path for being positive
living with Vitiligo. It turned me into who I am now. Vitiligo has shaped me to show up for others
but most importantly to find that inner self love. If you enjoyed this video
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