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.

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.

How Hollywoodlike masks and 3D models aid surgeons Cincinnati Childrens

Lilly has a very rare condition called linear nevus sebaceous syndrome. It's something that occurs within the first six weeks of gestation, and basically it's a syndrome that affects the skin and the central nervous system and the eyes. Lilly, look. Wanna play ball One of the characteristics of sebaceous levi is that when children get older, the become irritated, sometimes painful, the color changes, and there is the risk, you know, that those can turn in to malignant skin lesions. It's so big that you can't just remove it in a simple surgery. You need a series of surgeries that.

help generate normal new skin, and then use that new skin to remove the birthmark a portion at a time. For her the surgical process involves what are called tissue expanders, which are like water balloons. And once we put those in, they slowly are inflated every week for a period of about three months. And once they've become nice and big and stretched that normal skin nearby, we can use that normal skin to remove the birthmark. Now the question is how do we use that skin to remove as much of the birthmark as we can..

And so I reached out to my colleagues here at Cincinnati Children's, who were just beginning to explore hat can be done with 3D models, to figure out how can I simulate Lilly surgery. So what I was able to do is produce a 3D model that is exactly the same size and shape of the patient, and once I have that model I create a synthetic skin that overlays the model. So this is a silicon rubber. It looks somewhat lifelike. If you've ever purchased a Halloween mask, it's most likely made out of the same material. So then you do multiple layers,.

cover the whole model, and then you get nice and smooth skin. And then we worked to figure out the perfect type of system that simulates what normal skin behaves like. How much stretch does it have How thick is it How does it move And so what we decided to do is to make incisions to remove the birthmark from a center of the forehead and be able to move that normal skin over from each direction. The next step is we're able to make a template. So we make this template now.

and then when I go in to do Lilly's surgery I'll take this template and put it on her scalp and I'll be able to mark exactly where the incisions are. I love you. Love ya, doll. Okay, we'll take great care of her. So much of what we do in surgery you can't do it two ways on the same patient, and so I think being able to model each individual patient's surgery in advance is gonna just bring us a tremendous step forward. Her surgery took four hours and went exactly as planned..

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.

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