Today’s society, more than ever before, is all about looking “perfect.” Everyone on Instagram posts edited and filtered selfies to try and make everyone else believe that they, too, have a flawless complexion. Karine de Souza from Brazil, however, knows that beauty goes far further than skin-deep. This is because she has an extremely rare skin condition called xeroderma pigmentosum. This makes a person incredibly sensitive to direct sunlight and at a much higher risk of developing skin cancer. It also means that her appearance isn’t like that of other people. Still, she found true love, proving that love isn’t skin-deep either.
This Woman With A Rare Skin Condition Proves That Love – And Self-Love – Isn’t All About Appearance
Growing up with the rare skin condition xeroderma pigmentosum meant that Karine de Souza did not have a regular childhood. Her condition means she has spent most of her life indoors with the curtains drawn to avoid direct sunlight. In her life, she’s had over 200 surgical procedures to remove skin tumors, with her lower lip and the tip of her nose removed during the surgeries to remove melanoma. (1)
Sadly, society has not been kind to her. Whenever she does go out, she says people look at her in disgust and move away from her. Those are just the people outside – not even touching upon the terrible comments and hate she receives online.
“I am the target of a lot of glances, a lot of people staring at me, some of them distance themselves.” she says.
She Feared A Life Without Love
The Brazilian woman feared that she’d ‘never find love’ because of her condition. In 2018, however, she met her future husband Edmilson after he contacted her via social media. He said that he read her story and immediately fell in love with her resilience and strength of spirit. After months of messaging over Facebook they met in person and began dating soon after that.
Of course, as soon as they began posting about their relationship online, they began receiving more hate than ever. People questioned the legitimacy of their relationship. Many said that this must be a sugar-mamma situation, because why else would a handsome young man be with someone like Karine? The couple, however, pay it no mind.
“We have already read many offensive comments calling me a monster, deformed, a zombie,” she says. Still, she doesn’t let it bother her. “Be happy, smile, because life happens only once.” (2)
The couple have since gotten married and recently celebrated the birth of their first child together. Despite the comments and hate they receive, along with the high risk of Karine developing cancer, the couple couldn’t be happier. Their baby is also healthy with no signs of any health problems.
What Is Xeroderma Pigmentosum?
Xeroderma pigmentosum (XP) is a rare genetic disorder that makes people extremely sensitive to the damaging effects of ultraviolet light. People with XP are unable to repair certain types of damage caused by sunlight, which can lead to skin cancers and other health problems. The condition is caused by mutations in the DNA repair genes. There are two forms of XP: The most common type causes problems with cells’ ability to repair damage from ultraviolet rays (UV). A less common form of XP affects how well skin repairs itself after being damaged by trauma, such as burns or cuts. (3)
The first sign of XP is usually a small growth on the skin at birth or in early childhood. The tumors can develop anywhere on the body but usually occur on sun-exposed areas like the lips, nose, ears and eyelids. A person with XP may also have light sensitivity, an increased risk for eye problems and a higher chance of developing cancer. (4)
The condition is often mistaken for other skin disorders and can be misdiagnosed until a child begins to develop tumors. The tumors may appear as small bumps or blisters on the skin and sometimes bleed easily. They are usually painless but may become irritated by friction or rubbing against clothing or bedding.
No More Hate
It is incredibly sad to think that people have nothing better to do with their time then write hateful comments online about someone else’s appearance or relationship. Though Karine says they also receive nice comments from many people and ignore the rest, one can only imagine how hard ignoring all of this must be some days. We wish Karine and her family a lifetime of happiness, and that in the meantime, people will learn to be more kind.
Keep Reading: Meagan Barnard: Woman has rare condition that caused swelling in her leg
Sources
- “Woman afraid she’d never find love welcomes baby girl with husband.” Tyla. Joe Harker. March 24, 2023.
- “Woman whose skin is so sensitive to sunlight she has to apply SPF100 every two hours while indoors reveals people called her a zombie after part of her nose and lip were removed.” Daily Mail. Emily Scully. April 7, 2020
- “XERODERMA PIGMENTOSUM: RARE DISEASE CAUSES AN EXTREME SENSITIVITY TO SUNLIGHT.” AAD
- “Xeroderma Pigmentosum.” E Medicine. Linda J Fromm, MD, MA, FAAD. December 16, 2019.
