By Kate Moore @kitmoore

MEET the woman with a skin condition so rare, she cannot be exposed to direct sunlight

Scroll down for the full story

Videographer / director: Nathan Pellow-Jarman

Producer: Kate Moore, Danny Baggott 

Editor: Helen Mckee

At three years old, Karine de Souza was diagnosed with Xeroderma Pigmentosum - meaning every time she is exposed to ultraviolet rays, she is at risk of contracting melanomas on her skin. 

Karine, 29, has undergone over 130 surgical procedures to remove each one of these lesions, which has included removing her lower lip and part of her nose.

Karine told Truly: “I am the target of a lot of glances, a lot of people staring at me, some of them distance themselves.

“Every day the disease aggravates more and more.”

She spends her days inside her home, only venturing into the sunlight for a necessary doctor’s appointment, where she has to cover herself with 100 spf sunscreen every two hours.

Otherwise she must wait for cloud cover or nightfall.

Despite the medical difficulties she’s faced, Karine remains optimistic.

“I accept myself as I am, I am very happy,” she said.

“All these procedures have made me grow as a woman.

 “Many people find it strange, but I accept myself. Just as any other woman should accept herself.”

Three years ago, she met her husband Edmilson through social media.

Edmilson said that he “fell in love with her story” and her “strength”.

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

Karine explained: "We have already read many offensive comments calling me a monster, deformed, a zombie.

“We were the target of a lot of prejudice, a lot of people were doubting.

“There were a lot of comments of people saying things like, ‘she must be rich’, ‘she must be his sugar mommy.’

“That he is handsome and it’s not possible for him to be attracted to me.”

Even when they are affectionate in public, Karine said that people stare at them with “skepticism”.

Karine does see the positive side of social media though and enjoys using it to connect to others while she’s at home.

“I try to communicate to people, to always show the positive side of things," she continued. 

“It is always better to be thankful rather than complain.”

Now that the couple have been together for a long time, the judgment online has lessened.

“The majority of the people who follow us are people who have fallen in love with our story," Karine said.

“I think they saw it, that it is true love.”

Edmilson supports Karine, especially on days when she is feeling under-confident.

“Sometimes she asks if it bothers me, if I would like to be living another life,” he said.

“And I say no, the only life I want is by her side.

“There are all the nights for us to go out, the cloudy days, the rainy days.”

The couple hope to have a baby together in the future and move into a home which is more suited for her condition.

Karine remains positive despite the setbacks she’s had in life. 

“With every difficulty, I prefer to smile rather than cry," she said. 

“Be happy, smile, because life happens only once.”

“Despite the world being the way it is, love always wins.”

With special thanks to Victor André Teixeira for use of his photography.