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Woman has a rare skin condition that requires her to wear SPF100 sunscreen indoors

Woman whose skin is so sensitive to sunlight that she has to apply SPF100 every two hours, while indoors reveals people called her a zombie after part of her nose and lip was removed

  • Karine de Souza, 29, from Fortaleza, Brazil, was diagnosed at the age of three
  • She had Xeroderma Pigmentosum, which causes skin sensitivity and melanoma
  • She is deficient in DNA to repair her skin when it is damaged by UV rays
  • Karine has a cheerful disposition and is ‘very happy’ with her husband Edmilson

A woman with a rare skin condition who forces her to suffocate herself in SPF100 sunscreen every two hours, even when she is at home with the curtains closed, reveals that despite her challenges, she remains positive because “life only happens once.”

Karine de Souza, 29, from Fortaleza, Brazil, was diagnosed with Xeroderma Pigmentosum when she was three years old.

Every time her skin is exposed to ultraviolet rays, she is at risk for skin cancer because she is deficient in the DNA system that repairs damage.

Karine de Souza (photo), 29, from Fortaleza, Brazil, was diagnosed with Xeroderma Pigmentosum when she was just three years old

Karine de Souza (photo), 29, from Fortaleza, Brazil, was diagnosed with Xeroderma Pigmentosum when she was just three years old

But despite the constant risk of melanoma, Karine says she would rather laugh than cry, and want others to share her happy attitude to life.

Karine has undergone 130 surgeries to remove sun-induced lesions, including removing her lower lip and part of her nose.

She said Really: “I am the target of many looks, many people stare at me, some distance themselves.”

She explained that when she goes out, people look at her “with horror” before mentioning her names.

Three years ago, she met her husband Edmilson (photo) through social media. Edmilson says he 'fell in love with her story' and her 'strength'

Three years ago, she met her husband Edmilson (photo) through social media. Edmilson says he 'fell in love with her story' and her 'strength'

Three years ago, she met her husband Edmilson (photo) through social media. Edmilson says he ‘fell in love with her story’ and her ‘strength’

WHAT IS XERODERMA PIGMENTOSUM?

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

It has been described as a ‘one-in-a-million’ condition and is caused by a genetic mutation.

Sufferers need full sun protection, including clothing, sunscreen, and dark sunglasses.

Eighty to 90 percent of patients also experience:

  • Joint pain
  • Cognitive problems
  • Teeth abnormalities

Because patients are at a high risk of sunburn, skin cancer is very common in patients. There is no cure for XP.

Management of the condition includes protection from UV light, frequent skin exams and rapid removal of cancerous tissue.

Source: National Center for Advanced Translation Sciences

In her house, she closes the curtains to keep out natural light and only ventures for doctor’s appointments, in the dark or on rainy days.

Three years ago, she met her husband Edmilson through social media. Edmilson says he has “fallen in love with her story” and her “strength.”

Shortly after they started dating, the couple posted photos of them online together, and this led to comments that questioned the legitimacy of their relationship.

Karine has undergone 130 surgeries to remove sun-induced lesions, including removing her lower lip and part of her nose

Karine has undergone 130 surgeries to remove sun-induced lesions, including removing her lower lip and part of her nose

Karine has undergone 130 surgeries to remove sun-induced lesions, including removing her lower lip and part of her nose

Karine explained, “We have already read many offensive comments that call me a deformed monster, a zombie.”

Others suggested that she be Edmilson’s “sugar mama” and that she should be rich.

Despite all the setbacks, Karine is ‘very happy’ and enjoys life. She wants others to realize the importance of being positive.

“Be happy, laugh, because life only happens once,” she said.

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