Karine de Souza, who is 29 years old and from Fortaleza, Brazil, was identified with Xeroderma pigmentosum when she was three years old.
Every time UV rays hit her skin, she risks getting skin cancer because she doesn’t have enough of the DNA system that fixes damage.
But Karine says that she would rather smile than cry, even though she is always at risk of getting cancer. She wants other people to have the same positive outlook on life as she does.
Karine has had 130 surgeries to get rid of skin problems caused by the sun. Her lower lip and part of her nose have been cut off.
She told Truly, “A lot of people are looking at me, and some of them are trying to get away from me.” She said that when she does go outside, people look at her with ‘disgust’ and then call her things.
She shuts the curtains at home to block out natural light and only leaves the house for doctor’s visits or when it’s dark or raining. But she has to deal with more than just physical pain.
Karine often gets strange looks when she walks down the street and has been verbally abused both online and in person. But even though she has been through a lot, she stays positive and has even found love.
She met her husband, Edmilson, on Facebook three years ago. Edmilson says that he “fell in love with her story” and her “strength.”
Soon after they started dating, the couple shared pictures of themselves online together, which led people to question whether or not they were really dating.
Because he had always been with Karine, Edmilson knew he wanted to spend the rest of his life with her. He also decided to include Karine’s three children from her first marriage, which was important to her.
Karine said, “We’ve already seen many hurtful comments that call me a monster, a deformed person, and a zombie.” Some people thought she was Edmilson’s “sugar mommy” and that she must be wealthy.
When Karine and Edmlson had a girl in 2023, they were very happy. Karine and her husband had been trying to have a child since 2020, and it took a long time before they had their daughter, Zaia.
Karine is “very happy’ and likes life, even though she has had some bad luck. She wants people to know how important it is to be happy. “Be happy and smile, because you only get one chance at life,” she told him.