Lizzie Tenney breaks out in blisters if exposed to light

A young woman who is a real-life vampire suffers from a one-in-a-million condition that causes her to break out in agonising blisters if she is exposed to just a few minutes of daylight.

Lizzie Tenney, 22, who has xeroderma pigmentosum, develops severe sunburn after the slightest sun exposure, which has caused her to undergo skin-cancer surgery 43 times.

Despite suffering extreme symptoms since she was a baby, the rarity of XP meant doctors only identified Ms Tenney’s condition when she was 12 years old and went to a dermatologist with ‘sores’ that turned out to be skin cancer.

Ms Tenney, from Highland, Utah, who is forced to wear a bee-keeper style hat every time she steps outside, has coated her house and car in special ‘sun cream’, and  relies on a metre that measures the sun’s UV rays.

Her unusual get-up means Ms Tenney, who is studying religion at the University of Utah, is forced to endure cruel stares and comments from strangers. 

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?”  

Ms Tenney, who maintains a zest for life through her supportive friends, is speaking out to raise awareness of her condition and inspire other sufferers to live a full life. 

Lizzie Tenney (pictured with her mother) suffers from a condition that causes her skin to break out in blisters if she is exposed to just a few minutes of sun, forcing her to wear a bee-keeper style hat when outdoors, and even have her house and car coated in a special ‘sun cream’

Severe sunburn means she has had 43 skin-cancer surgeries (picture shows her latest scar)

Ms Tenney was forced to wear full protective clothing while on holiday with her family 

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WHAT IS XERODERMA PIGMENTOSUM?

Xeroderma pigmentosum (XP) is an inherited condition that causes extreme sensitivity to UV rays from the sun.

It has been described as a ‘one-in-a-million’ condition.  

XP is brought on by a genetic mutation.

Sufferers require complete protection from the sun, including clothing, sun cream and dark sunglasses.

Eighty-to-90 per cent of sufferers also experience:

• Joint pain
• Cognitive problems
• Teeth abnormalities

Due to sufferers being at high risk of sunburn, skin cancer is extremely common among patients. 

There is no cure for XP.

Management of the condition includes protection from UV light, frequent skin examinations and prompt removal of any cancerous tissue.  

Source: National Center for Advancing Translational Sciences

‘I love the night, the night is my sun’ 

Describing her condition, Ms Tenney said: ‘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.

‘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.’ 

‘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.’  

‘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 1,700; even on a cloudy day they can peak at 300-to-400. Lizzie goes out when levels are just 10-to-20.

Ms Tenney’s condition has perhaps understandably caused her to prefer nighttime. She said: ‘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.’ 

She is speaking out to raise awareness of the condition, saying: ‘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.’ 

Her unusual clothing prompts cruel remarks and stares from judgmental strangers 

Ms Tenney pictured using a metre that measures the strength of the sun’s UV rays

Part of Ms Tenney’s protective clothing involves her wearing gloves every day 

Ms Tenney goes outside if the metre (pictured) reads 10-20; cloudy days can be 300-400

Part of Ms Tenney’s daily routine involves her wearing a high-strength sun scream

‘She just loves life’   

Before Ms Tenney’s diagnosis, she was bullied at school due to her skin’s unusual appearance.

She 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, Ms Tenney is still stared at in public and has to cope with cruel comments.  

Thankfully, Ms Tenney has a supportive group of friends, including Alex who said: ‘She doesn’t let her XP control her. She just loves life.’

Ms Tenney is not the only member in her family to suffer from XP; her seven-year-old niece Anna also has the condition. 

Due to Anna being diagnosed fairly early in her life, her risk of developing skin cancer is much lower than Ms Tenney’s.

Anna’s father, and Ms Tenney’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.’

She was diagnosed after ‘sores’ on her face were cancer (picture shows her latest surgery scar)

Picture shows Ms Tenney being forced to wear protective clothing while on holiday 

Despite her condition, friends of Ms Tenney say she has managed to maintain a love of life

It is not safe for Ms Tenney to go outside when the UV-measuring metre records above 10-20

‘XP is so rare a lot of doctors don’t know about it’

Although Ms Tenney was diagnosed with XP just before she entered her teenage years, her parents noticed something was wrong early on in her childhood.

Her mother Kittie said: ‘When she was six weeks old 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.’

Due to XP’s rarity, it took years for Ms Tenney to finally be diagnosed in 2008 after her dermatologist Dr Cheryl Lee Eberting revealed sores on her face were actually skin cancer. 

Dr Eberting 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.’

Ms Tenney even has to wear full protective clothing when underwater (pictured swimming)

Although only diagnosed at 12, her symptoms started as a child, forcing her to wear sunglasses

As a child Ms Tenney (pictured with her parents) endured cruel remarks from school bullies

Children thought she was suffering from eczema and worried her condition may be contagious