News, Culture & Society

Melbourne student tells what it’s like to have a skin condition likened to third degree burns

‘Don’t go too close it might be contagious’: Teaching student who suffers rare disease that makes her skin break out in painful burns and blisters reveals the cruel taunts she receives from strangers

  • Teaching student Nurbanu Istar, 23, has the rare condition epidermolysis bullosa
  • She faces a daily battle to avoid itching, infections and discomfort when walking
  • The young woman is one of about 1,000 Australians to suffer from the condition 
  • Nurbanu said people confuse her for a burn victim or someone with chickenpox 

A teaching student living with a rare skin condition likened to third-degree burns has revealed how even the slightest irritation can cause her skin to peel off and blister.

Nurbanu Istar, 23, has suffered from epidermolysis bullosa (EB) since birth and faces a daily battle to avoid itching, infections and discomfort while walking.

One of the Melbourne woman’s biggest challenges is fighting through social stigma – with strangers assuming she is a burn victim or has chickenpox.

Teaching student Nurbanu Istar, 23, has revealed how even the slightest irritation can cause her skin to peel off and blister because of a rare skin condition likened to third-degree burns

‘Unfortunately a lot of the time when people see someone looking different, they are quick to judge,’ she said.  

‘”Oh my god what is that”,”look at her” and “don’t go too close it might be contagious” – these are just some of the comments I received growing up,’ Nurbanu said.  

EB affects about 1,000 Australians, but while the genetic condition requires constant skin management it cannot be spread from person to person.

Nurbanu’s toughest experiences included not being able to walk for days after developing large blisters on her feet from sightseeing in Sydney.

What is epidermolysis bullosa?

Epidermolysis bullosa (EB) is a disease affecting 1,000 people in Australia (roughly one in 25) and 500,000 people worldwide

Children with EB are sometimes referred to as butterfly children because their skin is as fragile as a butterfly’s wings 

It has been compared to living with third-degree burns

Sufferers must bandage themselves every day to protect any wounds

The condition is caused by a genetic mutation leading to a lack of the protein needed to bind the skin together 

There are many versions of EB, with some blistering after being exposed to the sun 

Nurbanu's toughest experiences included not being able to walk for days after developing large blisters on her feet from sightseeing in Sydney (some of her blistering pictured)

Nurbanu's toughest experiences included not being able to walk for days after developing large blisters on her feet from sightseeing in Sydney (some of her blistering pictured)

Nurbanu’s toughest experiences included not being able to walk for days after developing large blisters on her feet from sightseeing in Sydney (some of her blistering pictured)

‘My family decided to go around Sydney Harbour and the city of Sydney,’ she said.

‘We went to a lot of places which required a lot of walking. I had small blisters forming on my feet and within days it came to a point where I could not walk.’

Since dealing with more severe blistering as a child, the secondary school teacher has learned to contend with her condition the best she can.

She does not play much sport because of the risks involved for her skin and the fact she is also vision impaired, and cannot wear high heels. 

Nurbanu has also worked as a makeup artist and now has a better understanding of the foundation she can’t use. 

‘When I was about 15 or 16-years-old my Mum bought me my first ever foundation from a drugstore,’ she said.

Nurbanu (pictured)  has suffered from epidermolysis bullosa (EB) since birth and faces a daily battle to avoid itching, infections and discomfort while walking

Nurbanu (pictured)  has suffered from epidermolysis bullosa (EB) since birth and faces a daily battle to avoid itching, infections and discomfort while walking

She does not play much sport because of the risks involved for her skin and the fact she is also vision impaired, and cannot wear high heels

She does not play much sport because of the risks involved for her skin and the fact she is also vision impaired, and cannot wear high heels

Nurbanu has worked recently as a makeup artist and now has a better understanding of the foundation she can't use

Nurbanu has worked recently as a makeup artist and now has a better understanding of the foundation she can’t use

‘In-store it looked perfectly fine, however once I came home and started to use it on my face my skin started to blister and felt very itchy.’

Nurbanu had reacted to a chemical in the makeup, but through her recent career now knows she has to use vegan foundation to stop herself from having a reaction.

Despite her sometimes debilitating condition, the 23-year-old said she chooses to stay positive and embrace the hand she was dealt.

Despite her sometimes debilitating condition, the 23-year-old said she chooses to stay positive and embrace the hand she was dealt

Despite her sometimes debilitating condition, the 23-year-old said she chooses to stay positive and embrace the hand she was dealt

‘There is a quote I love: “life is tough and so are you”,’ she said.

‘Something I learnt growing up was everyone is different and this is what made them unique.

‘I always say to people who are going through hard times if you want to make the most of life always be positive, even in the times you think you can’t be.’ 

Read more at DailyMail.co.uk


Comments are closed.