The EB stories blog is a place for members of the EB community to share their lived experiences of EB. Whether they have EB themselves, care for someone living with EB, or work within a healthcare or research capacity related to EB.
The views and experiences of the EB community expressed and shared through their EB stories blog posts are their own and do not necessarily represent the views of DEBRA UK. DEBRA UK is not accountable for the opinions shared within the EB stories blog, and those opinions are of the individual member.
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
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
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
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
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
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
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
I have EB, I always have, but many things can change, one day I want to say I HAD EB! Read more
EB is a physical condition; managing my blisters and wounds takes up a huge part of my life, but EB also has a significant impact on my mental health. This is the invisible side of EB, which not everyone sees. Read more
My childhood wounds were different to my siblings and took longer to heal. For years I felt alone until I realised that I wasn’t the only one living with EB, and that there was support out there for me. Read more
Our beautiful baby boy Louis was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB) shortly after he was born last October. Louis having EB was a huge shock to us; the very beginning of our journey with EB. Read more