My journey through education with EB

Daval, who lives with autosomal recessive epidermolysis bullosa simplex, shares his story about his journey through education and his involvement with DEBRA UK. Read more

Playing rugby is the last thing people expect for someone living with EB

Obviously my skin tears easily and rugby is really aggressive but I don’t let that stop me. I've never let my skin stop me from doing what I want to do. Read more

You never know what EB will throw at you

I wish people understood that EB may be a physical disability, but it certainly has a mental impact Read more

Kai's story

I don't go out and play at lunchtime because the heat and the sweat will cause blisters, even if I'm not walking. So to avoid that, I'll stay inside and sit down. Read more

Getting married with the extra complication of having EBS

Heather, a 32-year-old living with epidermolysis bullosa simplex (EBS), shares her unique story of planning her February wedding to Ash, the love of her life. Read more

The Hinton family – our EBS journey

Due to the brilliant support we receive from the EB team at GOSH and the Community Support Team at DEBRA UK, we no longer feel alone with EB. Read more

Living with EB isn't easy

As a sufferer of EB simplex, I couldn't be more thankful for the assistance I have received over the last few years, and I wish I had known about DEBRA UK a long time ago. Living with EB simplex or any other EB condition isn't easy, but knowing there is support and advice at any given time has been a massive help to my life and situation. Read more

How and why had this condition suddenly invaded my family without warning?

I had never heard of EB before and I naively thought the blisters which were appearing on Georgia’s tiny body would heal - but when a doctor explained the full extent of EB to me I found the horror difficult to comprehend. Read more

EB has scarred me physically and emotionally

Both the physical pain, and the daily feeling of walking through hot embers, the uncontrollable itching from healing wounds, and the emotional pain which manifests itself through bouts of severe depression built up from years of physical and emotional trauma. Read more

Caring for wounds, managing pain, and preventing new injuries is our way of life

Having EB has made it difficult to compete in sports over the years including my passion: football. DEBRA have supported me in my new opportunity to play for Newport Town Football Club and it is an honour to represent them while playing. Read more

Once the blisters come, you just cannot get rid of them

When the temperature is cool it’s like she doesn’t have EB, but as soon as the temperature rises, the blistering starts, and then she can no longer do the things that her friends do. It's heart-breaking to see. Read more

EB is the force that made me who I am

I have EB, I always have, but many things can change, one day I want to say I HAD EB! Read more