Others have reached out to Fernanda on social media to thank her for being so confident about her skin. Mediadrumworld.com/Fernanda Tanajura

By Kate Harrold

 

THIS WOMAN is posting sexy pictures of herself online despite having a rare genetic condition that causes BLISTERING skin and oozing SORES and says it has never stopped her from dating.

Influencer, Fernanda Tanajura (20s) from Livramento de Nossa Senhora, Brazil, was born with a rare condition called epidermolysis bullosa (EB). This genetic disease is caused by an irregularity in the skinā€™s collagen causing the skin to become thin and sensitive. Friction against the skin can cause blisters and sores.

Having lived with the condition her entire life, itā€™s something Fernanda is used to dealing with. As a child,Ā she was unable to play in many outdoor areas as trees and shrubs could rub against her skinĀ but Fernanda was never treated differently by other children ā€“ so much so that she never saw herself as different.

Fernanda hopes to continue to bring a voice to those with EB. Mediadrumworld.com/Fernanda Tanajura

To control her condition, Fernanda has to maintain a strict skincare regime which consists ofĀ using sunflower oil and body cream every day to moisturise her skin. She also must dress any sores with bandages changing them every day.

Fernandaā€™s hands are the worst affected area as the skin here encounters the most friction. This trauma and lack of movement has caused muscle atrophy which means the muscle in Fernandaā€™s hands is wasting away.

Despite this, Fernanda is not one to be held back and can live independently regardless of her limited movement. She was particularly proud to figure out how to apply make-up despite her condition.

Fernanda has to change her bandages daily to keep her sores sterile and clean. Mediadrumworld.com/Fernanda Tanajura

Although the condition is not as painful as many might think, Fernanda regularly bandages her hands to protect the skin from further damage. She very rarely experiences noticeable pain.

Fernanda has always been well loved and supported by her family and friends yet sheā€™s also found an online following. Fernanda began posting to social media just like any other teenager but she soon became a voice for those with epidermolysis bullosa.

Although it happens rarely, Fernanda has encountered some online trolls who have criticised her appearance, however the majority of Fernandaā€™s followers have praised her confidence and itā€™s these people who motivate Fernanda.

Fernanda posing in a field wearing a floral dress. Mediadrumworld.com/Fernanda Tanajura

She hopes to continue bringing a voice to those with epidermolysis bullosa who are so often underrepresented and unacknowledged.

ā€œIā€™ve had EB ever since I was born,ā€ Fernanda said.

ā€œItā€™s considered to be rare and it has a huge impact on my health and daily routine.

Fernanda would love to model professionally one day. Mediadrumworld.com/Fernanda Tanajura

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

ā€œDespite this, I wasnā€™t aware I was different when I was a child. My friends all treated me normally.

ā€œI had some restrictions.Ā I couldnā€™t venture into forests or similar outdoor spaces as the vegetation could hurt meĀ but that was insignificant for me at that age.Ā I had a very happy childhood.

Fernanda says EB isn’t as painful as people may think. Mediadrumworld.com/Fernanda Tanajura

ā€œI have developed atrophy in my hands but incredibly, Iā€™ve learnt to adapt and can pretty much do everything normally ā€“ including my own make-up.

ā€œEB isnā€™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.

ā€œEven now, all of my friends and family support me. My condition has never held me back from connecting with people.

Fernanda’s skin is sensitive to friction which causes the sores. Mediadrumworld.com/Fernanda Tanajura

ā€œIā€™m single at the moment but my EB has never affected any of the relationships Iā€™ve had. People see past it.ā€

Fernanda began posting photos of herself to Instagram in 2014.

ā€œIā€™m passionate about photography and Iā€™ve never worried what others think so posting to Instagram was very natural to me,ā€ she said.

Fernanda pictured as a child. Mediadrumworld.com/Fernanda Tanajura

ā€œI receive so many comments on my positivity and people are complimentary of my appearance.

ā€œItā€™s made me feel very welcomed. Very rarely are people negative although Iā€™ve had a few verbal attacks criticising my appearance or pitying me.

ā€œI donā€™t need pity and I donā€™t want to please everyone but respect is essential.

The bandages protect Fernanda’s sores from further damage and infection. Mediadrumworld.com/Fernanda Tanajura

ā€œI want to give a voice to more people like me ā€“ to increase representation and bring something positive to peopleā€™s lives.

ā€œIā€™d love to maybe model professionally one day. Itā€™s a big dream for me and I think it would be great for EB representation.

ā€œLiving with EB isnā€™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.ā€