“You know how at airports and places like that, people slap a big, bright orange sticker on things like paintings and sculptures, and in bold white or black letters are the words ‘Handle with care’. Or when you’re shopping in the homewares section of a store and on the bottom of the wine glasses box [...]
To our incredible DEBRA Community, This Christmas we are asking you to help DEBRA Australia light up the Christmas Tree for all our families across Australia. Christmas is such a special time of year when families come together to reflect on the year that was and celebrate being together. For many of our EB families [...]
For me, the worst thing about EB is not the condition itself, it is probably the fact that it is genetic. Sure, when you are a youngster suffering with it, it can be horrible, really horrible. My memories of growing up with EB are a bit vague though. The first time I realised that I [...]
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 [...]
