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 does resonate with me, but there is cruel irony to it when it is your body which is sabotaging itself.

Learning to love my body wasn’t easy. I was bullied a lot as a kid and I always felt in a way that I never got to be a real kid like everyone else. I was never able to partake in sports or physical activities in fear of getting hurt. In primary school I also had the help of an aid which made me stand out from other children and that made me really self-conscious.
I was diagnosed with EB not long after birth when doctors noticed that I was missing skin on my left hand. My subtype of EB wasn’t correctly identified until 6 years ago when I turned 23 and I had the chance to undergo genetic testing again. The last time I had had it done was when I was born but technology has changed so much. It actually turned out that I have recessive dystrophic and both my parents are carriers for the gene. Having one parent with the gene is uncommon, but having both be carriers is considered pretty rare.
I think the main thing I now understand is that through all this is it’s really important to know that you’re not going to be confident 100% of the time. You can’t let anxiety keep you in bed in the morning. You really have to recognise when you need to take time for yourself and do things all the time that make you happy. I’ve slowly learned to be confident and happy in myself. I love makeup and beauty. I love to read. I enjoy a good date night like any other 28-year-old. I have learnt to realize that my condition is just a part of my story – it doesn’t define me. I even managed to get a Tattoo! Why not? I want to do what other people are able to do.
Sure, mentally it’s the little things that I feel like I should be able to do but can’t that take a toll. I can’t drive a car and whilst I’m currently studying Masters in Criminology and Justice at RMIT, it has also taken me a lot longer to finish my studies than it would other people. When I get an infection, I tend to get extremely tired so it can make things a lot more difficult with trying to keep up with my studies. I have been working through my degree part time for 3 years now but I’m finally in my last year! The hardest part physically though would be dealing with constant pain which I need to take pain medication for on a daily basis just to reach some type of level of comfort. At one point I was hospitalised for the pain it got that bad but other times it is just like this constant background pain which really affects how I sleep. I have to dress my wounds every day and this can take up to 40 minutes to do.
 
Over the years though I have learnt to embrace help as it is offered. I have carers 5-7 days a week and they will help me do certain things like wound care and going to the shops because I don’t drive. But what I really love is that they also come just to hang out with me. I even manage to get them to do Pilates with me usually a couple of times a week! I have really good friends, and I have met some of my closest friends through my EB diagnosis. Family is really important. I am also really blessed to have a close family who are really supportive. I live with my mum and partner, Sean who I have been with for 5 years now. Sean is amazing – he helps me with my wound care on weekends when I don’t have the carers there and when I have been hospitalised, he sits by my side every day.

There is no definition of ‘normal’. I’ve slowly learned to be confident and happy in myself, this is a strength in itself which along with the support of my family and friends is something I am truly grateful for.