Lizzie Tenney might sound like a real life vampire due to the agonizing blisters that break out on her skin whenever she's exposed to a few minutes of daylight, but actually, her condition is much more severe than just being a supernatural creature that feeds on blood.
The 22-year-old US citizen suffers from Xeroderma pigmentosum (XP) – a one-in-a-million, incurable disease that causes extreme sensitivity to UV rays by the sun. Lizzie's case is so severe that she had undergone skin-cancer surgery 43 times so far.
"If I am in the sun for five minutes I will get extremely sun burned and the sunburn will develop into skin cancer over time," Lizzie shared with Daily Mail Online. "The UV rays still come through the clouds even if it's really, really overcast."
Xeroderma pigmentosum is caused due to a genetic mutation, explains National Center for Advancing Translational Sciences. It required the patient to be completely protected from the sun – including clothing, sun creams and even dark sunglasses.
About 80-90 percent of sufferers also experience joint pain, cognitive problems, and teeth abnormalities. The heightened risk of sunburn even puts them at the risk of skin cancer – something that is extremely common in XP patients.
In Lizzie's case – despite suffering extreme symptoms ever since she was a baby, the rarity of the condition meant that she was only diagnosed at the age of 12 when her 'sores' turned out to be skin cancer.
The Highland, Utah resident can now go out only with a bee-keeper style hat, and even her house and car are coated with special 'sun cream' that measures the sun's UV rays. "I have to wear gloves and my hat and long sleeves and long pants and I also wear sunscreen so I can do anything," she said.
On extremely sunny days, UV levels can reach 1,700 and even on a cloudy day they can get as high as 300-to-400. Unfortunately for Lizzie, the advisable level to go out in is 10-to-20. But keeping a check of the UV rays is the most important measure to be undertaken to combat the condition, along with frequent skin examinations and instant removal of any cancerous tissue.
Lizzie's condition's severity comes with a lot of social stigma too. She said: "When I'm in public I get people saying 'Why does that girl have a bag on her head. Hey are you a beekeeper? Hey are you from Aerospace? Is that why you have to wear all that?'"
But Lizzie is speaking out to raise awareness about her condition and to inspire others to live a fuller life. Even though she prefers the night-time – with good reasons – she said, "I want to share my XP story because I want people to have a knowledge of XP, what it's about and how it is so rare, so people can have an understanding about it."
"The message that I would like to share with people is, just know that you are here on earth and just be happy and make new friends and have a positive attitude no matter what you deal with."