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 I think what is it like to live with one of the rarest skin conditions or hardest 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 cuz 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 [Music] him New Yorker has created a whole new persona to help her deal with Her diagnosis I think my lowest point in life was probably what 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 [Music] n after a couple of weeks we found out it was claraderma we always together know since growing up she always been like a dancing and
always been like a ball of [Music] energy I went from walking to using a walker and then in 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 going to snap out of [Music] it and from that F 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 shley 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 [Music] goth matched lifestyle mat to my personality I look at a fashion as an art form I like to express myself I mood with fashion it helped 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 [Music] fear charliie 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 scma I might be a little fragile looking I might have hor and like skin but I feel like there’s this immense strength Within Myself and I want to try to project that think I’ve gone through the worst in my life that anything else is just microscopic your perspective is 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
your fashion you know she infl me a lot with all these things she is wild thing she is rebellious is and she is amazing person I think you have pain and it’s going to only build character it’s going to build your strength I [Music] think life will never be perfect it will never be a perfect [Music] path over the years I think the tragic 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
[Music] that 11-year-old Lucas has an unusually extreme version of his condition i’ would love to be a race driver what kind of cars Chevy NASCAR Chevy and NASCAR yeah third row you got your straps okay awesome a professional already I was born with this disease called Giant cgeneral neas and that’s what’s all over [Music] me basically just a giant birth mark that’s all I can say about it giant congenital neas is a dark colored and often hairy patch of skin I wonder who won Kaye Giant in general Nas the stuff that I have is one
in every 500,000 kids it’s a very rare yeah how do you feel about getting on the wall good 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 look at me like I’m coming down right so it’s basically a large mole it starts the first 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 that’s no it was just hurting a little bit just hurting a little bit that’s why I was done yeah you want to take a little break yeah I’m just done did it hurt anything just just made uncom just made uncomfortable the main effects of giant congenital neas would be NCM which is the lesions in the brain and so he also has hydris which requires a VP shun and to be monitored every 3 to 6 months hydris is a condition characterized by an abnormal buildup of cerebral fluid in the brain I
can get brain masses easier because I have basically neous all over my brain and then I got an airplane game too oh my trail look 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 burnt I mean there’s no other way to describe it and so we were were really confused and [Music] curious yeah thank you Mommy and Daddy
you’re welcome 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 sixth grade it seems to be a little bumpier glass is a good place to have it 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 four-wheelers with me looking different has become increasingly difficult for Lucas I do yeah he has a 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 cuz 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 and have fun so team Lucas is basically um Lucas’s social media hub this is 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 we 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 Dad I can go behind here look I can go behind here so she’s no more than me I still ride my fourwheeler 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 the ICU man between me and him but uh I tell you
one thing um I’m glad he had his dad pull him pull and push you know uh he had that surgery on Monday and we were back here on Friday I’m just look is a strong wheed 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 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 what I grow up I want to be a Race Car Driver [Music] 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 still 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 cuz the skin comes off quite a lot oh no that looks terrible I’ll just try to um nor there’s always something hurting obviously I don’t go around my daily life thinking that hurts but I don’t really remember a time when there
was actually nothing sahana has epidermis Bosa or EB etis bla is a skin condition that sort of causes the skin to lose it glue that of holds it on so that means that was Fring 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 dropic e recessive dropic affects the eyes and the mouth and the 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 eie 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 and 1/ half hours to these dressings in the morning and then two in the evening I think it takes longer in the evening because I still been walking around so more blisters on my feet I normally wake up while mom is doing my dress things like my arms and
stuff and how what time do I up about six yeah about started about halfast 6 um sometimes it slips we’re always late for school there hasn’t been a day since sah 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 and this means another blister to prick but I got can’t imagine what that’s like for sahana who hears that and knows that her needles coming her way and there’s nothing she’s going to be able to do to really Escape having it
done so yeah so prison places is one of the most painful parts of the dressing process like blood blisses cuz they’re very the top like very sick isn’t it so it’s very difficult so you have to pick them lots of lots of times um so that painful soana was born with EB we didn’t know it when she was born because she was compl 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 six months we were terrified to pick her up and do anything with with her so when I go outside sometimes people still asked questions and like everyone STS a lot when we’re traveling we go to security once someone said I can’t go on the plane because I’m cont just it’s genetic it’s quite funny in a way it’s just how I deal with the problems I just see the funny side of [Music]
it s 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 likes have country limit Hi how are you how you normally when I go out with my friends I 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 well actually did did I don’t know what you were doing though no I was trying to do that mask paper oh yeah no we drew on it instead I’ve known sahana for 11 years I think since year one yeah before I knew Sana I obviously could tell she had E 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 don’t remember what I said but it was so one you were 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 Aur it doesn’t mean it shouldn’t be still pursed because it can improve the lives of people with the condition so much e causes painful blisters that need to be pricked with a needle please play play e pop for cury beam to make the blister stop oh my God I think you ever really get completely used to pain so for example Even If you experience something every day so going to hurt it’s just it’s not really surprising for me I
think obviously cuz physically I’m quite different to most people but like mentally are 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 um all the things she can do without focusing too much from what she can’t [Music] do like sahana Kiana has one of the most severe cases of her condition when I was born I popped out and I had a birth mark Kiana has a port win stain
birthmark it’s located on my first left side neck chest area I have a patch on my back and also on my scalp what a wi say birthmark is is the blood vessels titing and that’s why I get the color my birth mark 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 put W in 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 space the birth
mark just continues to grow what it really affects me is healthwise I have this mysterious fever and swelling that affects my birth mark it’s extremely extremely painful I have pretty much no Hearing in my left ear with such a visible condition Kiana’s had to get used to the attention that comes from looking different people stir at want to leave the house but when people just stay and they stay and inste 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 my birth mark affected my childhood I was always usually the last child to be picked for sports I didn’t make too many friends he was called a lot of names I was called prune face purple face one that was really popular was the purple people
[Music] eater in school K 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 just a Mark it’s not contagious nothing will happen to you if you touch her or you interact with her or anything like that so treat her like a normal person turning point for me to just accept my birth mark was the fact that I kept being teased and that there was no way my birth could appear it was
always going to be there and a teasing was always going to [Music] happen having my family be supportive 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 giana’s birthmark continues to grow as she ages causing her complications I have have a total of five surgeries on my birth mark the first two uh were the most critical I mean
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’s it was really really tough and every time I talked I used to droel as well well it’s like having this huge war in steak the weight of it on your face sometimes I would feel the blood just running and pumping to my birth mark 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 I look cocky
already but it it boosted my confidence a lot more Kiana’s um confidence has improved a lot but 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 birth mark foundation and what I do is that I help to create awareness of birth marks and I do this via my blog and pretty much anybody that I meet who asks me what do I have on my face cuz awareness is so critical even this world 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 birth mark Foundation that to me is a great achievement I have a sept my birth mark I have it is there I’m not going to say I’m perfectly happy with it because I don’t love it but it’s there I don’t want my whole life focus on the fact that I have a birth
mark I don’t want that to keep me back from enjoying life to know that I can help somebody who also has a birth that it feels like this is what I’m meant to be doing Brazilian born Karine might live in a city known for its beautiful Urban beaches but du to her incredibly rare condition she must do her best to avoid the sunlight at all costs zerma pigmentos is a rare genetic condition that causes extreme sensitivity to the sunlight for [Music] among the many operations Karina’s 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 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 [Music] [Music] extreme foree after recovering from the surgery to remove the cancer from her skull k realized people had donated more than she needed for her treatment [Music] a through karine’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 [Music] spee spee speee fore [Music] despite the many hardships she faces due to her condition Karen and Ed make the most of the life they are able to lead with one another [Music] in Florida a 13-year-old was born with a skin condition so rare he’s yet to be
diagnosed hi my name isia and when I up I like to be a professional gamer or a professional chef yeah I just got a my good I I’m sh for my age and um like I hear faster than usual during my pregnancy 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 six cystic fibrosis is a ROM test and that I should start preparing told me and his father we start preparing for his funeral that he wouldn’t last his first
year we said he’s going to make it through this and um 13 years later he’s [Music] 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 eiosis syndrome um Nethers syndrome iosis 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 so he has a proper uh name for his condition even if it’s rare it’s one 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 you heal you want to tell them a little bit about
I have a screwdriver and I I was riding it and we were going down a bridge and I didn’t know how steep it was and I lost control and I dusted my ha knee and my her as you can see here and it was healed within 3 days right completely healed no stitches no stitches no she gave me antibiotics and 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 um to keep his body oiled and cream which doesn’t do help because then he can’t really go outside because the sun will burn him even more with the oil um so we always put long sleeves on him protective gear uh we always put hat on him to protect them um from getting confirmed the Vaseline gets stuck on his clothes and on his hat um and it’s really hard to wash off because of the consistency and the oil so um we’re always getting uh always buying him clothes um always getting him hats um it
probably spend almost about $2 $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 somewhere else I’ve been quite ugly I’ve been quite ammo I’ve been C tomato I been my God you know just go CL me a disabled she said get out of feel you handicap 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 smell I don’t really care anymore I mean I’ve gotten used to it to the point where it doesn’t matter if they say mean stuff to me six and S break my V but Ro don’t Hur me you know those potatoes can we put so my sister yasine 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 [Music] 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 [Music] baby he sees you he’s not dumb he knows that you’re talking about him that’s not cool there is people that are different um we’re all different races different
colors yeah 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 we shouldn’t hurt each other’s feelings that way [Music] 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
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 Soo 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 cuz the reactions got
worse and worse as time went on we have no idea what my condition is what caused is it I’ve had so many tests so many like scans everything blood tests done been on so many medication 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 just never know when it’s going to happen never knowing when or why her skin flares up has been difficult for Nancy to come to terms with yay I love my life I love my
again 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 Ed 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 post on Tik Tok in 2019 some of the best comments I get is
when people tag their friends and say 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 going to be filming a Tik Tok with Tilly and she’s going to read out hate comments camo
print yeah those ones are so regular camo print pizza face things like that just knocks confidence a bit 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 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 one 15c video of their life I love her Tik Tok 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 a understandably hard thing to come to terms with and also be able to like embrace it just for what it is Tik Tok 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 cuz I wouldn’t deal with it like Nancy does but I love the way that she’s turned it into something positive my flareups 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 develop V like at AG to 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 I remember her just taking me to a specialist and they wanted to kind of do these light treatment which
like this orcher lights and we found out that it was viigo take the weights my mom loved me no matter what but I felt like the rest of the world didn’t understand viigo at the time it was always the question what happened to your face were you burnt were you in the fire because my self-esteem was so shattered I was just empty inside No One never 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 vidigo put a toll on my life I grew up thinking that what I seen in the mirror or 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 AG of seven 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 will show up and look in that mirror and reassure myself that nothing is wrong with me growing up with Vio I didn’t have no real representation it kind of 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 seven years ago I started
that vial guy that was my ghost writer handle where I would just put out these daily Vlogs 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 cuz it all starts with you start viewing yourself as you are because at the end of the day it’s always going to be you versus you I’m just getting ready 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 viigo as a disability or was disadvantaged she treated me as I was like my brother or my [Music] sister hey hey Mommy how are you good to
see you he what’s up so how’ 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 3 years before I became an author and I wanted to go into the school system to educate people on viigo 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 so 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 want to be treated I am proud of James being the author and I am such a proud mother of the man that he have come and where he’s at right now and where he’s going and I know it would be great I’m working on a new book currently The Man Behind the face I just been in the process is really putting this content together but I’m super excited about it and I’m going to
actually share some of my life experience it’s almost 100% completed I think I’m going to shop it around or I might just self-publish it it’s going to 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 that great person that you are and that I instilled in 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
