The Woman Who’s Allergic To Daylight | BORN DIFFERENT
31
August

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


LIZZIE TENNEY: If UV rays touches my skin,
I burn really bad and then I develop skin cancer. COMM: The sun’s rays, so often a symbol
of health and happiness. But for one young woman in this quiet town, they are nothing
short of deadly. LIZZIE TENNEY: I have had 43 skin cancer surgeries. LIZZIE TENNEY: So my latest surgery was on
Tuesday and they found a different type of squamous cell carcinoma, which grows really
fast and it was like, about, maybe that big. LIZZIE TENNEY: Well, they numb it and then
they slice it and then they stitched it up. COMM: Lizzie was born was born with a rare
condition known as Xeroderma Pigmentosum or XP. Her skin is unable to repair its own DNA
once it has been damaged by the sun’s harmful UV rays. At home, all the windows have been
lined with protective filters. But it’s the outside that presents the biggest danger. KITTIE TENNEY: Okay! We are getting ready
now. Every day she has got to put on this sunscreen. COMM: For Lizzie leaving the house is a huge
ordeal as even the tiniest gap in her clothing could allow UV rays through and prove catastrophic. KITTIE TENNEY: Jeans are the best that have
the tightest weave and so she has got her jeans on. She’s got her gloves. She likes
those that she can text with of course. LIZZIE TENNEY: Yup! KITTIE TENNEY: And this meter shows the amount
of ultraviolet rays. Of course inside, it’s at zero, but outside it turns to like, sixteen
hundred. Lizzie is supposed to be under 10. COMM: Lizzie’s mom had noticed the signs
of XP some time before she was able to give it a name. KITTIE TENNEY: When she was six weeks old,
about thirty minutes in the park and we came home. The next morning her eyes were swollen
shut, her face was red and, you know, we rushed to the doctor. Unfortunately, XP is so rare
that a lot of doctors don’t know about it. And, so, he just said ‘Oh, well, I guess
she just got a little too much sun.’ COMM: For years after, Lizzie and her family
were completely unaware she had a potentially fatal genetic disorder. KITTIE TENNEY: She lived a very normal life. KITTIE TENNEY: Except for all her burning. KITTIE TENNEY: All the sunburns that she would
get would make her skin look pretty bad. KITTIE TENNEY: She tops it all off with this
hood. KITTIE TENNEY: So she is covered head to toe
and ready to go outside. Oh! Don’t forget your meter. LIZZIE TENNEY: Thank you! COMM: It wasn’t until Lizzie was 12 that
a local doctor shed light on her condition. LIZZIE TENNEY: I found two sores on my face
that wouldn’t go away. So I went to a dermatologist and they said, ‘Oh, that’s cancer.’ COMM: Remarkably, the doctor happened to be
one of the few XP experts in the world. DR CHERYL LEE EBERTING: I had actually seen
a lot of cases of XP. So, I, of course, thought of that first thing when I saw Lizzie. Whereas,
I think someone who had not had that perspective probably wouldn’t even have suspected it.
The dangers of XP include the development of multiple skin cancers and other problems such as neurological problems and developmental problems. COMM: The diagnosis completely changed the
way that Lizzie had to live her life. KITTIE TENNEY: Do you have your meter, Lizzie? LIZZIE TENNEY: Yeah. KITTIE TENNEY: Okay! On a typical cloudy day,
the meter runs about three to four hundred. But on a super sunny day, it runs sixteen
hundred. It goes on and off. Let me see that. LIZZIE TENNEY: So it’s reading four hundred
right now. Now when it’s under the hat, it’s only ten or at nine. So it does really
help. So I feel actually pretty safe. LIZZIE TENNEY: In the very beginning I felt
sad and I said, ‘Please, don’t stare at me. I am just a normal person.’ I felt,
kind of, sad and upset. I took it, remarks from people saying, ‘Why does that girl
have a bag on her head?’ LIZZIE TENNEY: ‘Are you a space mutant?’;
‘Hey, are you a beekeeper?’; ‘Are you from outer space?’. So I explained to them
what it is. Because I want people to have a knowledge of XP. KITTIE TENNEY: Lizzie is a real champion I
think when it comes to her diagnosis with XP. She really is upbeat about it. LIZZIE TENNEY: I think I am positive because
I have a great big family. I have five brothers, I have two sisters, twenty nieces and nephews. COMM: XP in the US affects one in one million
people. What’s rare is still is having two instances of it in the same family. LIZZIE TENNEY: My niece has XP. She is seven. MAN: When my daughter was first diagnosed
with XP, she was just one-year-old. She had a really bad sunburn and we took her to a
doctor who recognised it. Thanks to, to my sister. Even with having XP in the family,
we were still shocked. I am really grateful for my sister, Lizzie, and the example she
has been to my daughter and just, kind of, a hero to her. COMM: And Lizzie’s niece isn’t her only fan. KATHRINE TUTTLE: She is really outgoing and
she just like, loves everyone that she meets. LIZZIE TENNEY: So, I could pretty much walk
to anyone and they are saying, ‘Oh, Lizzie. I want to be your friend. You are so fun to
be around.’ ALEX WESTOVER: She doesn’t let her XP control her. KATHRINE TUTTLE: She is just the funniest
girl I have ever met. ALEX WESTOVER: She just loves life. LIZZIE TENNEY: Message that I would like to
share with people, just know that you are here on earth and just be happy, make new
friends and have a positive attitude no matter what you deal with.


29 thoughts on “The Woman Who’s Allergic To Daylight | BORN DIFFERENT

  1. Aren't there places in the world that get no sunlight for half the year? I know it would cost a lot but wouldn't it be helpful to move somewhere like that? At least she'd be able to enjoy going outside. Honestly regardless of where she moves, most places would be better than Utah

  2. Why doesn't she live underground? No sunlight underground. This poor girl should be living in a bunker!

  3. I feel so bad for her but I also feel so bad for those poor animals. The goldfish living in that bowl 😭

  4. Dear people in the comment section.

    If you're experiencing these symptoms: Hives, sunburn, rash, sore skin, nausea, dizziness, headache, thirst, and vomiting…

    You have Heat Stroke. Heat Stroke is not a milder form of XP, for crying out loud! Illnesses aren't trampolines. Stop jumping on every single one you see!

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