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International EB Awareness Week 2020

Did you know a YouGov poll revealed that only 9% of UK adults had heard of EB (Epidermolysis Bullosa)?  

This number is shockingly low. At DEBRA we are working to change this. For International EB Awareness Week 2020, we are launching an awareness campaign to create a wider public understanding of this complex and devastating condition.  The more people who know what EB is and the impact it has on individuals and families, the greater chance we have of increasing support for the EB community and funding for crucial research into treatments and a cure.

What is EB?

EB is a group of genetic skin conditions that cause the skin to be so fragile it tears and blisters at the slightest touch.  It causes constant pain due to unstoppable internal and external blistering. There are many different types of EB, ranging from the mildest, in which only the big toes are affected, to the most severe which can have a devastating effect on any part of the body, causing lifelong disability and pain; in some cases it can be fatal.     

We want to put a spotlight on this little-known condition and raise awareness of the impact it can have on individuals and their families. Having EB is not just about living in constant physical pain. The invisible psychological and emotional challenges the EB community face are relentless.

“If we can [raise awareness] of this cruel condition, and instead of people wondering what is wrong with my son, has he been burnt etc. after a while, hopefully people will begin to recognise EB, that's my hope.” Sarah Thomas, mum to Oliver who has Dystrophic EB 
 

Join our campaign


Our awareness raising campaign will run on social media. It will focus on highlighting key facts about what EB is with personal stories from the EB community and our specialist medical teams to give an insight into living with EB. 
   
“EB to me is a son I couldn’t hug, screams I can’t forget, and a daughter growing up without an older brother.”  EB Parent 
  
“EB to me is an unimaginably painful condition which I believe is one of the worst conditions in the whole entire world, and it has definitely changed my life forever.”  Teenager with EB  
  
We’re asking everyone to do one small thing to make a big difference -  please take 30 seconds to watch the short videos on our social media channels each day and share their stories to your own community. Together we can #FightEB.   
     
Find out more about the different types of EB here. 

Find us on Twitter, Facebook, Instagram and LinkedIn.

  
*Public awareness of EB (Epidermolysis Bullosa) and the work of the charity is low currently, particularly when benchmarked against conditions with similar numbers.  A YouGov poll undertaken for DEBRA UK in 2019 revealed that 9% of UK adults were aware of EB. The level of awareness rose to 12% when given a description of the condition and to 15% for the charity name DEBRA.  Conditions with similar numbers in the UK such as Motor Neurone Disease had a significantly higher level of awareness at 92%.   All figures, unless otherwise stated, are from YouGov Plc.  The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+). Total sample size was 2,153 adults in fieldwork undertaken between 27th - 28th August 2019 and 2109 adults for fieldwork.

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