What's it's Like Living With Epidermolysis Bullosa - Men's Health Magazine Australia

What’s it’s Like Living With Epidermolysis Bullosa

Day-today life with a diseases that cause fragile, blistering skin.

If you haven’t heard of Epidermolysis Bullosa (EB), you wouldn’t be the first to admit it: the rare disease, which effects an estimated 1,000 people in Australia, and over 500,000 worldwide, is characterised by blistering and peeling skin at the slightest touch. Living with EB has been likened to living with third degree burns – it is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.

One sufferer – though he prefers not to be called as such – is Matt Bevilacqua, an Australian Ironman and younger brother to Bondi lifeguard Joel Bevilacqua. As a child growing up with a family history of EB, Matt became aware of the impact EB has on lifestyle and participation in sports and other events, however forged ahead with his Ironman career.

After finishing 9th in his debut Nutri-Grain Ironman, Matt moved up to 7th in 2014/15. In the 2015/16 series, Matt won his first Ironman race and finished the series in 3rd place overall. In 2018, after 5 years competing in the series Matt took out first place in the 2017/2018 Nutri-Grain Ironman series.

Here, Matt explains what life is like with EB, and how resilience played an important part in getting him to where he is today.

“Despite struggling with a mild form of EB Simplex, I have forged ahead with a Professional Surf Ironman career and I am now an Ambassador for DEBRA Australia

Epidermolysis Bullosa (EB) is a rare disease whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns. It is very painful, and individuals living with EB must be bandaged every day with dressings to protect and medicate our wounds.

EB is characterised by skin fragility with blister formation occurring spontaneously or following minor trauma. There are four major categories of EB: Simplex, Junctional, Dystrophic and Kindler Syndrome – I suffer from EB Simplex. It is estimated that there are around 1,000 people in Australia who have some form of EB and over 500,000 worldwide and it affects males and females equally. 

Patients living with EB are faced with daily challenges, as no cure exists and current therapies under development have faced both safety and technical challenges. EB is an area of unmet medical needs with current management focusing on relieving patient pain, stopping infections and providing dressings which are passive and do not address the symptoms associated with EB including severe scarring, infections and development of squamous cell carcinoma. 

My EB was at its worst when I was 14-16 and I struggled to play games at school as a normal kid. When I was in high school I wanted to do sports like all the other kids but I couldn’t run around the same way. I loved AFL but it was too harsh on my feet, so I needed a sport where I didn’t need to wear shoes. I also found that being in the salt water was really good for my EB. With reduced friction and being able to have my feet wet, Ironman became the perfect sport for my condition. 

I got started by joining my local surf life-saving club at Clifton Beach as a nipper, and later commenced competitions.  When I was 16 I became the youngest person at the time to win the Tasmanian Open Ironman title – a race I went onto win three years in a row. From there I moved away to QLD to chase my dream of becoming a professional Ironman. 

Growing up with a childhood clouded by pain every day from EB, my pain threshold has always been higher than my competitors. With acceleration I rose quickly through the ranks and became the first ever Tasmanian to make the Nutri-Grain Ironman Series. In 2018 I became the Nutri Grain Ironman Series Champion and a year later I won the iconic Coolangatta Gold.”

By Nikolina Ilic

Nikolina is the former Digital Editor at Men's Health Australia, responsible for all things social media and .com. A lover of boxing, she has written for Women's Health, esquire, GQ and Vogue magazine.

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