'I've learnt to adapt': woman's rare skin condition affects her life in every way

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Fernanda Tanajura was born with a genetic disorder called epidermolysis bullosa (EB), which causes the skin to become fragile and covered with blisters and sores. (PHOTO: Instagram)
Fernanda Tanajura was born with a genetic disorder called epidermolysis bullosa (EB), which causes the skin to become fragile and covered with blisters and sores. (PHOTO: Instagram)

Although her condition has severely affected everyday tasks, this Brazilian woman is refusing to let it stop her from living her life.

Fernanda Tanajura (24), from Livramento de Nossa Senhora, was born with a rare genetic disorder called epidermolysis bullosa (EB), which affects one in 50 000 people worldwide.

The disease causes the skin to become fragile and covered with blisters and sores – and any friction could result in a breakout.

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As a child she was unable to play outside as her parents were afraid trees and plants might brush against her skin.

“It's had a huge impact on my health and daily routine,” she says. “I couldn't venture into forests or similar outdoor spaces but I still had a very happy childhood.”

Fernanda has had to stick to a strict skincare regime to prevent breakouts. To moisturise her skin, she applies sunflower oil, body lotion and dresses any oozing blisters and sores with bandages.

“Sometimes I require medical monitoring if my condition gets worse. Living with EB isn't always easy but the sum of the positive experiences I have had motivates me and makes me believe I have a bigger purpose,” she says.

Fernanda’s hands are worst affected by the disease, with atrophy causing the muscles in her hands to waste away.

“But I’ve learnt to adapt and I can do pretty much everything normally – including my own makeup.

“EB isn't as painful as people think. It rarely causes me pain unless I have a severe injury. In my daily life, I live fairly normally,” she says.

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Fernanda says she’s been able to maintain relationships with her friends and family.

“I’m single at the moment but my EB hasn’t affected any of the relationships I've had. People see past it,” she says.

In an attempt to raise awareness of the skin condition, Fernanda has started sharing her story on Instagram and hopes it will give a voice to other sufferers around the world.

“I'm passionate about photography and I've never worried what others think so posting to Instagram was very natural to me,” she says.

“I receive so many comments on my positivity and people are complimentary of my appearance.

“It's made me feel very welcomed. Very rarely are people negative although I've had a few verbal attacks criticising my appearance or pitying me. I want to give a voice to more people like me – to increase representation and bring something positive to people's lives.”

Sources: Instagram, Daily Mail, Metro

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