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Woman With Rare Genetic Condition Says She Won't Let It Stop Her From Dating

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Woman With Rare Genetic Condition Says She Won't Let It Stop Her From Dating

A inspirational woman with a rare genetic skin condition has spoken out about dating, explaining despite the huge impact it has on her life, it has never held her back.

Fernanda Tanajura, from Brazil, was born with a rare condition called epidermolysis bullosa (also known as EB). The disease is genetic, and is caused by an irregularity in the skin's collagen.

This causes the skin to become thin and sensitive, with any kind of friction able to case painful blisters and sores.

Fernanda was born with a rare condition called epidermolysis bullosa (Credit: Media Drum World)
Fernanda was born with a rare condition called epidermolysis bullosa (Credit: Media Drum World)
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Fernanda, who is a social media influencer, has been living with the condition her entire life. As a child, although she was unable to partake in certain activities - for example playing in outdoor areas that could irritate her skin - Fernanda was never treated any differently by other kids.

To control the EB, Fernanda - now in her twenties - has to maintain a pretty strict skincare regime which consists of using sunflower oil and body cream every day. Any bandaged sores must also be changed regularly, too.

"I've had EB ever since I was born," says Fernanda.

"It's considered to be rare and it has a huge impact on my health and daily routine.

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"I have to maintain a daily skincare routine, change my dressings, and sometimes I require medical monitoring if my condition gets worse.

This causes the skin to become thin and sensitive, with any kind of friction able to case painful blisters and sores (Credit: Media Drum World)
This causes the skin to become thin and sensitive, with any kind of friction able to case painful blisters and sores (Credit: Media Drum World)

"Despite this, I wasn't aware I was different when I was a child. My friends all treated me normally.

"I had some restrictions. I couldn't venture into forests or similar outdoor spaces as the vegetation could hurt me but that was insignificant for me at that age. I had a very happy childhood."

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Fernanda's hands are the worst affected area as the skin here encounters the most friction due to day to day activities. The trauma and lack of movement has now led to muscle atrophy (which is where the muscle wastes away).

"I have developed atrophy in my hands but incredibly, I've learnt to adapt and can pretty much do everything normally - including my own make-up," she continued.

"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."

Fernanda has been living with the condition all her life (Credit: Media Drum World)
Fernanda has been living with the condition all her life (Credit: Media Drum World)
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Fernanda says her condition has never held her back, adding that she is well supported by some incredible family and friends.

Despite being a voice for those with EB on social media, sadly, Fernanda has encountered some online trolls who have criticised her appearance, however the majority of Fernanda's followers have been mega supportive.

And Fernanda says it doesn't affect her love life, either, explaining it has never stopped her connecting with people.

"Even now, all of my friends and family support me. My condition has never held me back from connecting with people," she said.

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Fernanda says her condition has never held her back (Credit: Media Drum World)
Fernanda says her condition has never held her back (Credit: Media Drum World)

"I'm single at the moment but my EB has never affected any of the relationships I've had. People see past it.

"I'm passionate about photography and I've never worried what others think so posting to Instagram was very natural to me.

"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."

Fernanda is passionate about giving a voice to others living with the condition (Credit: Media Drum World)
Fernanda is passionate about giving a voice to others living with the condition (Credit: Media Drum World)

Fernanda is passionate about giving a voice to others living with the condition, and wants to bring some positivity and cheer to the lives of others.

"I don't need pity and I don't want to please everyone but respect is essential. I want to give a voice to more people like me - to increase representation and bring something positive to people's lives," she says.

"I'd love to maybe model professionally one day. It's a big dream for me and I think it would be great for EB representation.

"Living with EB isn't always easy but the sum of the positive experiences I have had motivates me and makes me believe that I have a bigger purpose."

Fernanda is a true inspiration!

Featured Image Credit: Media Drum World

Topics: Life News, Dating, Health

Lucy Devine
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