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 him! One of my first memories is when we played junior football and how Matt was really good at it, but struggled to play out full games, no matter how much he wanted to – he would persist until he was forced to come off the field and go and soak his feet in buckets of ice.

Matt was diagnosed with a mild form of EB Simplex where blisters and areas of skin loss (erosions) appear in response to something as simple as rubbing or scratching, and episodes like this with the footy game would see him hobbling around at school for the next few days from the blisters which had formed on his feet.

A diagnosis of EB in our family was nothing new for us though unfortunately – My Mum and Grandma both have it, as does my little brother, Will. My cousin is also currently battling with it and is having a really tough time with it all. Like so many families who deal with EB, working out how to manage it has been the biggest learning curve and we have become a family that knows how to bounce back. Not many people can say that their grandma was renowned for bringing around the newest range of plasters and wound care products for heel and feet care instead of cupcakes!  That being said though, things like getting all the right shoes and socks have dramatically improved the quality of life for members of  my family like Matt, who suffer from EB.

Matt went on and pursued nippers (lifesaving), and later commenced competitions. He is now a champion Australian Ironman. I moved away from sport and whilst I originally graduated from journalism, I just never got the right job.  I always loved the longer formed writing and reading so I decided to take up teaching.  This year I took on my first teaching role as a Year 7-12 English teacher. It has been hard to navigate an online / in-person teaching model but there is something about high school students – they have this eagerness, excitedness and yes, the competitiveness that Matt and I showed growing up, especially the Year 7s!  

I haven’t lost my affinity with the ocean though and am a casual lifesaver at Bondi Beach and have even been a regular on the TV show, Bondi Rescue. I also completed a 10k run in 40 minutes or under in the month of May for EB awareness and had to undergo some fierce cardio training including running 4-5 times per week so Matt is not the only one with some athletic ability in the family!

As we have grown up though, Matt and I have become a lot closer and are always mucking around and having a joke (He might be the athlete, but I’m the funny one!). I’m mostly always there cheering him on from the sidelines and it is just like a family reunion. Watching him race is my favourite thing in the world and I am so proud of him.

What I have learnt from being a brother of two siblings with EB is that these people are resilient. Nothing gets in their way and they keep pushing on as best as they can. EB doesn’t define them.