Woman with rare skin condition overcomes negativity and finds true love

Thanks to the rise of social media, we’re all bombarded with images of seemingly perfect-looking people; it seems as though the world has become even more shallow in how people are judged.

For those of us that don’t fit the stereotypical “perfect” mold, the world can seem very cruel, with complete strangers feeling it necessary to criticize someone based on their appearance on social media.

Karine de Souza knows this more than anyone. The Brazilian has spent her life covering her skin in SPF100 sunscreens – even when she’s inside her home – due to her rare skin condition.

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The 33-year-old was diagnosed with Xeroderma Pigmentosum when she was three years old which means she is at high risk of skin cancer.

Her ”one-in-a-million” condition, which is incurable, means she is highly sensitive to UV rays as she lacks the ability to repair any damage the sun causes to her skin.

Just a few minutes in the sun can mean incredibly painful sunburn for her. Growing up, she was often isolated from the outside world because it was too dangerous for her to spend too much time outside her house.

“When I expose myself to the sun it doesn’t happen in the moment, I don’t feel anything. However, in the future, the lesions appear and need to be removed because of cancer,” she says.

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Karine has had to endure 130 surgical procedures to remove lesions caused by the sun, including the removal of her lower lip and part of her nose.

Sadly, it is not only a physical battle she has to endure. Karine often gets stared at in the street and has been the victim of verbal abuse both within her community and online.

But despite her suffering, she remains upbeat and happy and has even found love.

She met her husband Edmilson through social media, who fell in love with her “story and her strength.” Edmilson has always stood by Karine’s side, and he knew he wanted to spend the rest of his life with her.

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He also decided to embrace Karine’s three children from her previous relationship, which of course, meant a lot to Karine.

”He came and he showed me that I could live a true love story”, she says.

But after posting photos of them together online, Karine was once again exposed to a whole host of offensive comments.

”We have already read many offensive comments calling me a monster, deformed, a zombie,” Karine said, as per the Daily Mail.

Other comments suggested that their relationship wasn’t genuine and that Karine was a ”sugar mommy,” and that she must be very rich.

Posted by Daniel Panisson Fotografias on Sunday, October 7, 2018
”Because of the fact he’s a young man and pretty, that caught people’s attention and they didn’t believe that he was with me because he really liked me,” Karine said.

A photographer who captured the couple after they got engaged posted a selection of the images online and wrote:

”In a world where appearance matters more than the feeling, they met not by chance, but by a gathering of souls, an encounter of acceptance and character and love emerged when their souls met and today you are the inspiration to so many people who do not believe in themselves, in life and especially in love.

“THANK YOU every day for being who you are. STOP complaining for being like you are. HUG LIFE, and accept yourself. Much gratitude for teaching me so much. You guys are AMAZING. You are the missing hope in so many people. Thank you for the big hug, and for the wonderful day we experienced together. I carry your smile with me forever.”

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His heartfelt words and beautiful images he captured of Karine and Edmilson went viral, and thousands of people commented, congratulating the couple.

Karine wants others to realize the importance of being positive.

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

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In 2023, Karine and Edmílson welcomed a baby girl into the world, and they couldn’t be happier! Their daughter, Zaia, was long awaited – Karine and her husband had been trying for a baby since 2020.