Syndrome

My Face Waardenburg Syndrome

Hi everybody! today's tutorial is gonna be a little more serious and educational, but try not to worry i'm not going to make you feel like the world is going to end or anything, it's gonna be okay.I've been reading your comments and things as you post them, and i really like to hear from you, and hear what you like and what you don't like about.Pretty much everything.I just wanted to touch base on a recurring theme that i'm seeing in a lot of comments.There's quite a few comments about my appearance,.

Which i don't mind, they're good and bad.Either way, you know what i'm fine, i don't care.Mostly good though, so thank you! but the two things i hear most often are number one you look like a beautiful elven prince! number two you look like an alien.Tongue clicks and whether you believe the first, the second, or both, which is also fine i'm just here to explain to you why my face looks so unique.I know it does, i'm not stupid.But unique is not synonymous with bad, and bad is not synonymous with unique, and oranges.

And apples, and toast and butter and moans.Basically, i have a genetic mutation called waardenburg syndrome.It sounds scary when you say mutation, it sounds scary when you say syndrome, but it literally is extremely minor, i function normally.Normally , i'm getting into these ableist terms now, like.I'm part of the xmen that's all you need to know.Essentially, it effects my facial structure, the pigmentation in my body and my hair and my skin and everything, and also my hearing! i inherited this from my mothers' side of.

The family, so a lot of us on her side look very similar, we have extremely similar faces.And that's just sort of common for people with waardenburg syndrome to look similar.There are people halfway across the planet with a very similar face to me and i think that's really interesting, because i'll see them online or out and about, which is rare i've probably seen three or four people outside of my family with waardenburg syndrome ever, so it's really interesting when i get to see somebody and i know their struggle,.

I get them, you know with my face, what waardenburgs has affected is basically the width of everything.So, i'm sure you've noticed that my eyes are spaced considerably apart.And honestly, the way i think of this now is it's like telling someone they have a big nose i know! i think it looks great.I don't care! but i want to just make sure you know everything that's going on here, you know i just want to make sure you guys know what's going on.To cover a lot of ground all at once, it's.

Widened my eyes, my lips don't have any cupids bow, i don't know if you can see that.I'm looking at the screen, that's taboo but like, yeah! there's no cupids bow here, right so it's more flat, which means whenever i do big drag lips, i have a really nice 1940's smear, which makes me very happy.As far as the spacing of my eyes goes, because this is usually what people target and viciously attack about me, it took me a long time when i was younger to learn to ignore people's comments because the more i acted, you know,.

Hurt, and the more i was visibly wounded by these people, the more they would do it.So my confidence was whittled down to almost nothing until i started working with makeup, which is why i love makeup so much! because i can alter my face, but i've come to love my eye shape now.It was something before that i felt you know, i can put makeup on and it's different! but now i like my eyes regardless of whether i have makeup on or not.I like them both ways.My nose, too! i don't know if you guys see.

This, this little cute little thing on my face here.So there's no bump or bridge or ridge it's just sort of a slope.And that's from waardenburgs syndrome, it gives you this sloped sort of elven shaped nose.It's really convenient for me, seeing as i'm actually, you know, an elf.So everything else with my face, besides the width of my eyes, my lip shape, and my nose, is just normal genetic traits, just from my background.Another thing that waardenburg syndrome does is drastically increases the rate at which your hair grows.That means this hair too,.

Because when i moved to toronto, everything was almost buzz cut, except for this which was about here.This happened in about a year, and i've had one haircut, so, that's like a foot, i think.I'm not really positive, i don't measure, numbers are not my talent, okay but i know my hair grows very fast, i have to pluck my eyebrows every day, i have to shave every day.That's why in some tutorials, i look like thor, and in the next tutorial i look like a fairy elf princess, like.

So moving on to the pigmentation in my body! the number one thing a lot of people will notice immediately is the eye.The eye colour.That's my natural eye colour, it's been that way since i was born, it's just basically it's the absence of colour in my eyes, it's blue, but it's very translucent, so that's why with direct sunlight they look extremely bright and it's not that i've photoshopped them, it's not that i am wearing a coloured contact lense, it's just the light is reflecting a thousand different ways at once.

Another thing that's interesting is the white forelock of hair, so i'm looking in the camera right now and i can't really.Alb just bleached my hair last night, thank you lady, i love you.I have a natural white hair growth about right here, this all naturally grows in completely white.And it's been that way forever, the rest of it naturally grows in a dark brown.But again, i just coloured my hair so, you can't really tell, but right here is all white like rogue! from xmen, if you guys know rogue, that's me, that's.

My sister, that's my mother, it's me! now, lastly, and i feel pretty importantly, waardenburgs syndrome affects your hearing, right so, it affects everybody differently.For example, myself, i'm deaf only in my.Checks ears for hearing .Left ear! my mother, for example, hears out of both ears, and she's got waardenburgs syndrome as well, but my cousin is completely deaf, and he was born that way as well.So everybody with waardenburgs syndrome, for everything including facial structure, hearing, pigmentation, it's always a degree.There's a degree to everybody.It doesn't affect my life too much, the only.

Time when it really makes things difficult is in large open classrooms, for example, during high school i had quite a bit of trouble with that but i made it work.Gymnasiums, there's too much echoing happening, in large crowded restaurants, or bars, or clubs, i don't enjoy myself because i don't know what is happening at all.There's so much background noise, and it's like, imagine if every sound you ever hear is coming at you right here, and it's all right here, that's every day.So, if i'm in a large crowded bar, i don't.

Know who is saying what, where it's coming from, i have no idea what's happening.So those situations make me feel really anxious and panicky, because i feel like i have no control over what's happening because i don't know what is happening.So that's why i tend to prefer quieter, smaller activities, because i can understand what's going on.Similarly, if you're walking with me, for example, and you're on my deaf side, i will run into you.Many times.It's like, i can see you, i know you're there, but my.

Body isn't getting the right cues, it's not understanding where you are, your footsteps are in a certain spot.So i kind of swerve this way constantly, it's tricky but it doesn't really.I 've got it under control, it's just if you walk right next to me, i'm gonna hit you.I really just wanted to make this tutorial because i felt like when i was eleven and twelve and thirteen, and when i was really struggling with my confidence, with my appearance, there was nobody that i could find anywhere online.

In the media, anywhere, that had a face like mine.So i just want you to know that we exist, we're out there, we have beautiful faces, you have a beautiful face, i want you to know that you have a beautiful face! and if you don't think you do, you will one day, and i can't wait for that moment to happen for you.Because, it can be very hard to get there.But there's no feeling like it, really.I mean, i'm sure there is, but, it's just, i.

Feel achieved! there's something really empowering about looking very different from everybody around you.And i don't know how to explain that to somebody that's self conscious about it, but you will find it one day i think, and it's really exciting.So, that's all i can really think of to explain right now.But if you guys have questions, feel free to leave them in the comments, i'll get to them, i promise.I love talking to you, if you're curious though you can always read online! there's lots of information, there's many types of waardenburgs, i went.

Over very basic kind of broad spectrum kind of thing, so definitely if you have questions or you're curious, there's so much information out there! i'm going to put some links in the info box below that you can check out if you really are interested.That being said, if i find any hateful comments below, i will be removing them because i expect lots of young people with waardenburg syndrome to find this tutorial, and i do not need your hateful thoughts poisoning their mind and poisoning their thoughts on themselves.That's.

Teenager Suffering From Rare Harlequin Syndrome

0001 hunter people need to understand that it's ok to be different.It's ok to not fit the norm because there is no norm.0009 comm when people first meet teenager hunter steinitz, many believe she's been a victim of horrific burns.In fact, hunter was born with ultrarare genetic condition, harlequin ichthyosis, meaning her skin is too thick and leaves hunter with scaly dry patches all over her body.0025 comm her arrival in the world was a shock for mum patty and dad mark.0030 mark you can tell in all of those individuals,.

Those medical people in the room, their faces, right then, i knew something was clearly wrong.0041 comm in the past, sufferers often died early because they miss vital defence barriers in their skin.Today, raised awareness and new medical techniques are helping people like hunter live long lives.0054 comm the condition poses many challenges for sufferers, who have to grow up in a world where people point, stare and react badly to them.0103 hunter gym was the worst because gym, you know, you're forced to be in physical content with one another.People would flip out and.

A lot of the time the teachers wouldn't do anything because they don't know how to react.0116 comm after years of harsh bullying, hunter started to question things.0120 hunter maybe i deserved it.Maybe, you know, i was this freak and i was this different entity.I didn't deserve to be around normal people.0131 comm but not everyone was mean.Some pals, like samantha beers stuck by her, no matter what.0136 samantha i've been friends with her since we were 3 because she was there for me when i needed her.

0140 comm with support from her true friends and loved ones like dad, mark, hunter turned a corner and began to change the way she saw herself.0148 hunter i'd be a totally different person without it.My family would be different people, i wouldn't have the same friends and so i owe everything about my life to, you know, the disorder.0201 mark she recognises that she can do whatever she chooses to do, and that there isn't anybody out there, regardless of the kind of confrontation they provide her because of what she looks like, that can prevent her from doing it.

0216 comm with a new lease of life, hunter is now helping to educate others with motivational speaking.0222 hunter people need to understand that it's ok to be different.It's ok to not fit the norm because there is no norm.0231 comm with a fresh outlook, hunter is now preparing for life at university and she's ready for anything.0236 hunter for every 2 idiot who can't get it into their thick skulls, there's another 3 who are gonna open up to some level, who are gonna be able to see past it and be able to see me.I'm not normal and proud of it.

Irritable Bowel Syndrome Toddler

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