By Carolin Schmidt
Scroll down for the full story
Videographer / director: Sohrab Mirmont
Producer: Camile Rocha-Keys, Ruby Coote
Editor: Josh Halil
Lizzie Tenney suffers from the rare, and extreme, skin disorder Xeroderma Pigmentosum.
With there only being around 300 diagnosed cases in the United States – it makes Lizzie one in a million.
Xeroderma Pigmentosum commonly known as XP, is a rare degenerative disease, causing the skin to be unable to repair its own DNA once exposed – and damaged by – the sunlight’s harmful ultraviolet (or UV) rays, even resulting in skin cancer, neurological problems and developmental delays.
In Lizzie’s case she has had skin cancer surgery 43 times.
The 22-year-old, from Highland, Utah, has to use a specially-designed metre that measures the level of UV rays and tells her when it is safe to go outside.
Lizzie told Barcroft TV: “If I am in the sun for five minutes I will get extremely sun burned and the sun burn will develop into skin cancer over time.
“I love the night, the night is my sun; the night is my daytime. I feel happier at night when I come outside I can be normal.”
But even shade or dusk can cause third degree burns, Lizzie explains:
“The UV rays still come through the clouds even if it’s really, really overcast, I still have to wear my protection to keep me safe so I don’t get burned.”
Lizzie is currently studying religion at Utah Valley University but if she wants to go out during the day, she needs to wear full protective gear, including a hat with special coated plastic attached to it to completely cover her face.
She also covers herself in suncream and her home and car windows have a special coating to shield her from UV rays.
Lizzie said: “I have to wear gloves and my hat and long sleeves and long pants and I also wear sunscreen so I can do anything - I just have to put my stuff on and be safe.
“I have protection film on my house windows and in my car windows and if I need to go somewhere in my friend’s car I can take my plastic with me.”
Although UV rays are invisible to the naked eye, the metre, that Lizzie carries on her at all times, measures the UV levels.
Lizzie said: “I need the reader everywhere I go to measure the light and make sure I am safe.”
On a particularly sunny day, UV levels can reach 1700; even on a cloudy day they can reach 300-400; Lizzie goes out when levels are just 10-20.
Lizzie was diagnosed with XP at age 12 but her parents noticed something was wrong with their daughter from early childhood.
Lizzie’s mother, Kittie said: “When she was six weeks old and we had her outside in a park in the stroller maybe for about 30 minutes.
“The next morning her eyes were swollen shut, her face was just like a bee, red, and we rushed to the doctor and we just couldn’t imagine what was happening to our child.”
Because XP is so rare it can be difficult to diagnose and it took years for Lizzie to have a name for her condition. Noticing two sores on her face, Lizzie went to see her dermatologist Dr. Cheryl Lee Eberting, who told Lizzie these were in fact skin cancer.
Dr. Eberting, finally diagnosed Lizzie in 2008.
She said: “Unfortunately XP is so rare that a lot of doctors don’t know about it.
“XP is somewhat difficult to diagnose, especially when you are not expecting it.
“Because of my experiences in national institute of health where I worked with a researcher who specialises in diagnoses and treatment of XP, I had actually seen a lot of cases so I of course thought of that first thing when I saw Lizzie.
“Whereas I think someone who not had that perspective probably wouldn’t have even suspected it.”
Even before her diagnosis, Lizzie was bullied at school because of her skin’s appearance.
Lizzie said: “It was mostly in elementary school they didn’t really understand me because my skin was all red and all itchy and eczema-y so they really didn’t want to sit by me. I would go sit by them and they would walk away or I would walk to the table they would pull out the chair from under me."
Having overcome the bullies’ taunts as a child, Lizzie is still stared at in public and has to cope with mean comments.
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?’
“And I’m like no. I have to wear this because it’s protecting me from the sun and it’s called a hood and it is SPF protected so that the sun cannot come through.”
Now, Lizzie has a supportive group of friends who admire her zest for life.
Friend, Alex said: “She doesn’t let her XP control her. She just loves life."
And amazingly, Lizzie is not the only one in her family that gets reactions like this. Her seven-year-old niece Anna also suffers from XP. Because she was diagnosed pretty early in her life, she will probably be skin cancer-free.
Anna’s father and Lizzie’s brother, Josh said: “I am really grateful for my sister and the example she’s been to my daughter and is kind of a hero to her to be able to see what life isn’t what life has in store for my daughter.”
Keen to raise awareness of her condition and hopefully help others, Lizzie 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, and so people can be understanding of 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.”