Defying the ‘Living Corpse’ Stigma: Woman Triumphs Over Rare Skin Condition Through Surgical Valor

Defying the ‘Living Corpse’ Stigma: Woman Triumphs Over Rare Skin Condition Through Surgical Valor

A woman with a rare skin condition that forces her to smother herself in SPF100 sunscreen every two hours, even while inside her home with the curtains closed, reveals she stays positive despite her challenges because ‘life only happens once’.

Karine de Souza, 29, from Fortaleza in 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 of skin cancer because she is deficient in the DNA system that repairs damage.

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

Woman born with rare skin condition finds love after life of bullying

But despite the constant risk of melanoma Karine says she prefers to smile instead of crying, and wants others to share her upbeat attitude to life.

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

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

She explained when she does go outside people look at her in ‘disgust’ before calling her names.

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

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 brought on by a genetic mutation.

Sufferers require complete protection from the sun, including clothing, sun cream and dark sunglasses.

Eighty-to-90 per cent of sufferers also experience:

  • Joint pain
  • Cognitive problems
  • Teeth abnormalities

Due to sufferers being at high risk of sunburn, skin cancer is extremely common among patients. There is no cure for XP.

Management of the condition includes protection from UV light, frequent skin examinations and prompt removal of any cancerous tissue.

Source: National Center for Advancing Translational Sciences

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

Three years ago she met her husband Edmilson through social media. Edmilson says 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 has had 130 surgical procedures to remove lesions caused by the sun, including the removal of her lower lip and part of her nose

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

Others suggested she was Edmilson’s ‘sugar mommy’ and that she must be rich.

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

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

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