AN 18-YEAR-OLD who was bullied over her rare genetic condition - that severely affects her appearance - has silenced her critics by embracing her disorder on social media. Hannah, from Mirfield, UK, was born with Hay-Wells syndrome, also known as Ectodermal Dysplasia, - a condition that has left her hair, teeth, and skin undeveloped. Hannah, who is one of only eight people in the UK and 30 world-wide known to have this disorder, decided to embrace it and is on a journey to become a disabled model. She also started posting videos of her on TikTok and Instagram to raise awareness of her condition and help other people with Hay-Wells syndrome.
Follow more of Hannah's story: https://www.instagram.com/hannahharpin/
Follow more of Hannah's story: https://www.instagram.com/hannahharpin/
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00:00When I was a young girl I just saw sadness, but now at 18 I just feel bad **** in the mirror.
00:07My condition affects the skin, the teeth, ears and a lot of things.
00:14I think a lot of people judge me because of my disability. They don't like the way I look.
00:21How do you feel about going out in public without a wig?
00:25It just clips on like this.
00:27Like that. You just need a moment to turn up.
00:35I'm at 18 and I've got a condition known as Hair World Syndrome.
00:42It affects the skin, the teeth, our ears, respiratory system and our organs.
00:53It affects the hair. I've had roughly about 10 surgeries.
00:59I've had one for my hearing aid development, one for my cleft palate.
01:05And one because my teeth are taken out, clothes that I had about 10 days between.
01:11He just likes to be the centre of education.
01:15Hannah was born four weeks early. We thought she had Down Syndrome but they told us that Hannah's got Hair World Syndrome.
01:25She'd be in hospital lock. I just thought she'd never get to 18 because of what she'd been through.
01:33By the second year of high school, that's when they all kicked off.
01:37All bullying them and then taking another.
01:39When you go into high school, people start seeing their flaws.
01:43Like people start to pick out skin colour, hair colour, disability.
01:49That's when they start nitpicking at you.
01:52They were just making fun out of my lips.
01:56The way I looked, my eyes.
01:58I thought it got to the stage where I pulled her out of school for a mum.
02:02Yeah, I think a lot of people choose me because of my disability.
02:07You get like the little kids what stare.
02:10You get the evil look when you're going to shocks.
02:14I used to check it out on people because I didn't like the way I looked.
02:20But now, I'm okay with the way I look because I believe in self-love.
02:27Like if someone just stares at me, I'll wave at them.
02:32I'll just say hello to them now.
02:35Now she's 18, she's a young lady.
02:38And she'll do well out of life knowing she'll beat those bullies.
02:43This is my favourite wig.
02:45It's human hair. I dyed it myself in pink.
02:49My first ever wig, I remember it.
02:52I wanted it like as Hannah Montana.
02:54How do you feel about going out in public without a wig?
02:58I just feel like a little bit shy because today, like,
03:02you've got like people who are really nasty.
03:05Are we going to go to the cafe now?
03:08Yeah, I might take off my wig. It just depends how I feel, so come on.
03:12When I'm at high school, I used to get made fun out of wearing a wig.
03:18Sometimes when I'm feeling like really self-conscious of wearing my wigs to have like methods.
03:28How did you go for the cafe then?
03:30How did you go for the cafe then?
03:32I was a bit shy about the cafe then?
03:34Well, this is like the first time stuff went outside the house when I went on.
03:38It feels weird.
04:04It's nice.
04:06The first time I posted a picture of me was at my wig on was September, October 2019.
04:18It went on Instagram and then I moved on to TikTok.
04:24I think what methods and products say is like love everybody for the way they are.
04:33Even if you are missing a leg, missing hair, you should be loved by anybody and everybody in this world.
04:41Beauty is what's on the inside. Beauty has no standard. I think this condition has made me to be stronger.
04:53When I was a young girl, I just saw sadness. Now, at 18, I just hear bad s*** in the mirror.
05:23I was a young girl, but I can do that.
05:35I had to make my wish.
05:37I can do the same thing.
05:39I don't know. I just saw that.