As National Family Support Coordinator I frequently observe the strength and determination it takes to live with ‘the worst disease you’ve never heard of’. To say caring for individuals living with EB takes a lot of courage and hard work is an understatement. It’s relentless, gruelling and takes nothing but sheer grit and dedication to [...]
In honour of EB Awareness week, I wanted to share my story living with the condition. I was diagnosed with Epidermolysis Bullosa Simplex (Dowling Mera). Simplex is the term they use to for the mild subtype of EB, and Dowling Mera is the term they use for the most sever form of Simplex. When I [...]
My name is Kimberley and my son Hayden (5 years old) has EB Symplex. I had never heard of EB before my son was diagnosed but I had come across the Butterfly Children a few years ago and learnt a bit of information about it. Hayden was diagnosed just before his first birthday. He was [...]
My EB Story, by Bianca Saunders People always see the blisters and scars on the outside, but can often forget about the scars we carry on the inside. I once read that a scar simply means you were stronger than whatever tried to hurt you. It’s a lovely sentiment and the idea of strength really [...]
DEBRA Ambassador, Joel Bevilaqua, tells his story of EB through a brother's eyes Growing up, Matt and I were always super competitive, especially when it came to sports. Matt has never let EB stop him though and still likes to joke that he has spent his whole childhood waiting for me to catch up to [...]
Hot off the press! The research team from Adelaide (Prof Krasimir Vasilev, Prof Allison Cowin and Dr Zlatko Kopecki) from University of South Australia are excited to share their latest research publication in the prestigious American Chemical Society journal Applied Materials and Interfaces. This research was supported by DEBRA Australia Research Grant and describes the [...]
Obstacles don’t define us, but the way we tackle them can. I haven’t let EB stop me from living my life. I want to be proof to others that they can overcome adversity to achieve their hopes, dreams and goals and do pretty much anything they put their mind to. I like to think that [...]
Article written by A/Prof Albert Mellick As a scientist based in Australian academia over the last 20 years I am well aware of the challenges and limitations of relying solely on government funded research. Despite the many breakthroughs that have come in the long history of science by studying rare diseases it is often the [...]
Are you getting bored and struggling to fill the time whilst having to stay at home? The EB Family Support team has searched all over to bring you a list of great resources to help you and your family learn a new skill, continue with your hobbies or even stay connected with others. There’s [...]
As our organisation is experiencing uncertain times due to the current public health emergency, we are struggling with our ability to raise funds for our EB families and the life changing programs we deliver. We are concerned for the health of our EB families and have already heard heartbreaking stories of some of our [...]
