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.

Staley athlete battles back from rare skin disease

KELLY SHE IS 15YEARSOLD, AND SPORTS HAVE ALWAYS COME EASY FOR HER. THAT IS, UNTIL SHE CONTRACTED A BACTERIA THAT PUT HER DOWN FOR THE COUNT. KMBC 9'S KAREN KORNACKI WILL INTRODUCE YOU TO ALANA VATER AND HER BATTLE TO GET BACK ON THE FIELD. KAREN TO SEE ALANA NOW, A FRESHMAN, Y WOULD NEVER GUESS WHAT SHE HAS BEEN FOR THE LAST TWO YEARS. A BATTLE WITH A RARE BUT SERIOUS SKIN DISORDER CALLED STEPHEN JOHNSON SYNDROME. gtgt MOST OF MY SKIN WITH BLISTER UP, BIGGER THA BLISTERS YOU WOULD GET ON THE STOVE.

WE WOULD TRY TO KEEP A LUBRICATED SO WOULDN'T SCAR. MY MOUTH WAS SWOLLEN, LIPS WOULD APPEAL. KAREN SHE WAS IN THE HOSPITAL FOR 17 DAYS. THAT WAS BACK IN NOVEMBER, 2013. THE HARDES THING WAS NOT PLAYING ANY OF T FOUR SPORTSTER WAS INVOLVED IN. gtgt IT WAS THE MOST FRUSTRATING THING EVER BEEN THROUGH. I DON'T LIKE BEING TOLD THAT I CAN'T DO SOMETHING. KAREN THIS PA FALL, IS THE ONLY STARTING FRESHMA SHE HELPS DAILY WHEN A SOFTBALL STATE TITLE. NOW SHE IS TRYING TO DO THE SAME.

Skin condition girl fights back against Internet bullies, wins!

We all know the Internet can be a cruel place, especially if you are like Carly Findlay, who suffers from a rare skin condition called Ichytyosis. Anyway, this sassy lassy from Melbourne, Australia, has given heart to all victims of Internet bullying by fighting and defeating the multiheaded hydra that calls itself the front page of the Internet. It all began when a lone Redditer discovered a picture of Carly online and then decided to post it to Reddit's WTF section. Predictably enough, the derogatory comments and amateur diagnoses started to roll in from.

Brothers Suffer From Rare Condition Similar To Vampirism

0006 MANDY I have heard mentions, people saying about the condition being like a vampire and the teeth. I remember, it were funny really, we went trick or treating and the boys already had their teeth y'know and their friends had to guy and buy plastic ones to put in, so they sounded like uh, looked like vampires. And the white skin as well, they're very fair skinned, so, it's very similar. 0031 SIMON People do say we look like vampires sometimes because we have pale skin and we have our front teeth. I'm not really fussed,.

I think it's quite cool to be like a vampire. 0048 SIMON HED stands for Hypohidrotic Ectodermal Dysplasia, and basically it means you can't sweat, and are pale and and fine hair. And you don't have any teeth. 0101 SIMON If we're in sunshine we wear like, we wear our hats, and we put on sun cream. It affects me, in ways, that I can't go out in heat in the summer, and it's hard when we go on holiday because we have to go in like, winter time. And at supper we have to have soft food because we don't have any teeth.

Baby born with rare skin condition that leaves her looking like a DALMATIAN

A BABY girl has been born with a rare skin condition which leaves her with DALMATIAN like spots across her body. The little girl's parents are now trying to raise money so that she can undergo laser treatment. The large moles cover much of her skin and it is feared that the spots will cause her problems with being accepted as she grows older. Twomonthold Wu Zimiao was born with congenital melanocytic nevus a type of mole and birthmark that affects about one per cent of babies worldwide. Large congenital nevi are caused by mutations in the body's cells during early embryonic.

Development there is no known method of prevention. While the moles do not cause any physical pain, they are often removed to prevent cancer, as well as to avert psychosocial issues in the future. Little Zimiao's father, Wu Xianpo, said he had never seen anything like it in his life but was relieved to hear that the condition is easier to treat the younger the patient is. The dark spots are mainly on Zimiao's left shoulder and right arm but they also appear on her head and back.

Bullied Because Of My Skin Condition Body Bizarre Episode 3

0001 COMM Los Angeles, USA. Where a 24yearold skin condition has led to years of bullying. 0009 LISA My name is Lisa Johnson, and I have vitiligo. 0015 LISA Vitiligo is a skin condition, it is eating out my colour cells, to cause my skin to change different colour. 0026 COMM Lisa's condition is severe with white patches covering more than a third of her body. And although vitiligo is not a killer disease, it's psychologically devastating to sufferers. 0040 LISA When I was in high school kids were very mean. The abuse, the name calling, fights, I would just go home and cry, I would find.

Myself running to my sister, my sister always had my back, she would always fight my battles, I had somebody there for me to help me out through this time in my life. 0108 COMM Lisa was traumatised by years of bullying, even today she expects the worst and being out in public is difficult. 0121 ROBERT The staring, that's a lot y'know, being in public and people staring, instead of saying hey how you doing they just stare, and they look, like she's not of this planet. 0135 ROBERT Like she's an outcast or something.

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