I spent the next few months of my life in hospital. My parents were only 19 and 21 years old and only after learning the traumatic task of changing my dressings, were they allowed to bring me home.
I was sent home without any supplies or dressings, mum & dad had to figure out how to manage life with EB on their own. There were no EB support groups in Australia at that time, only the medical professionals at the Royal Children’s Hospital and their EB knowledge was limited, they were learning too, and didn’t really know of the problems that would arise from living with severe EB.
Normal practice was that EB dressings were changed daily, and my mum was very much frowned upon for changing my gauze dressings every second day, rather than daily. Mum did this to give me a break from the pain and torture, and it allowed me more time to live like the other kids, and not miss out on things like sleepovers at friends’ houses.
My parents didn’t know that EB was a genetic condition and decided to have another baby, who was not born with EB. I was lucky to grow up with my brother Andrew. Having him by my side helped me learn to socialise with other kids, and learn independence and confidence. I’ve never been shy around males because my brother always included me with his mates. He never left me out! I would hang out with the boys in our street and I’d do my best to keep up with them. I learnt to ride a bike by 10 years of age, but I had to be innovative! I would tie 1-2 jumpers around my waist to pad the bike seat, and wear mittens or pull sleeves down to protect my wounds and my skin from all the bumps & knocks.
I loved riding so much because I was able to keep up. Running – I had no chance, I still walked a lot, but I would pay for it terribly. Once I entered the 1500m walk in the annual school athletics day and pushed the entire days’ itinerary back 45 minutes… there was a lot of angry parents and bus drivers at that time…lol. When I couldn’t walk because of my wounds, I would scoot on my hands and bottom to my neighbor’s house, so I could watch everyone play, rather than miss out entirely.
I would try to find other ways around fences (that kids would easily jump over) or sit and wait with our bikes while the others ventured on to golf courses and into quarries. I wasn’t silly, I knew when to fold! I’d watch my friends running through the quarry as security guards chased them! My mum and dad gave me the freedom to live!
Mum always remembers the best advice a doctor gave her, was that I would figure out what I could and couldn’t do! Of course, I’ve had my share of horrible accidents and injuries and I would often be house bound.
My eye problems began when I was really little and to this day, I still struggle with them. Corneal abrasions mean keeping my eyes closed for 24 hours a day for between 2-5 days at a time.
So, just like a blind person, I see by feeling. It is a self-preservation tactic, keeping them closed and bathing them in saltwater helps them heal faster. Corneal abrasions can be caused by just sleeping. I remember on around my 4th birthday; dad gave me a dolly, but the pain was so unbearable, I couldn’t open my eyes to see my present.
On many occasions I have sneezed and it caused blisters or blown the skin off the roof of my mouth. I had to learn to swallow different ways and sneeze a different way.
In my lifetime, there has been many different types of dressings. The worst was plain gauze which would embed into the flesh and was really painful to remove.
Mum would have to cut around my socks and singlets when they got stuck directly to my wounds, we would leave them as it acted like a dressing until my next bath. The dressings available to EB suffers now are 300% more gentle to remove and with products like Niltac, its truly life changing.
In my infancy, I learnt to withhold number 2’s because of the pain it caused which is very common living with EB. Nurses would visit my home to administer enemas. These were the scary, old fashioned kind with funnels and hoses. I would see them pull up in the driveway and I would hide outside from them. That later changed to hospital treatments where we would have to wait for hours until I went to the toilet. Such is EB, even enemas would not work effectively!
I had wonderful friends in school, they would always look out for me. They would even form a human wall to protect me when needed. I had a different circle of friends outside of school, whom I would be a bit naughtier with…
I even got a job, my driver’s licence and moved out of home at 18, but in hindsight, I didn’t just burn the candle at both ends – I flamin’ destroyed it! By the time I was nearly 21, I started to get weeping eczema. My body became 90% wound and for more than a decade battled the most terrible time in my life and was close to death a couple of times.
Now, I am heading toward the big 5-0 and I, along with a few others are entering uncharted waters. There is simply not much information and data for this age range, because sadly, most people with severe EB don’t make it this far. And those of us with RDEB, have Jack Dancer’s shadow (cancer) forever following us.
I hate that so many wonderful EB warriors have left us way too soon. I feel selfish worrying about these new problems, like my deteriorating eyesight, my skin strangling me, my fingers that can’t be fixed and will need removing, and knowing that I will become totally dependent and no longer able to go to bed late, make myself a cuppa or do my craft hobbies whenever I feel like it.
My throat is so beaten up, I just have to swallow a little too hard in a dream and I split the lining. At the moment it heals enough for me to have a cuppa, but there is always the fear of when it will no longer repair itself and swallowing is a permanent issue. There are so many things I could have tried to fix if I had known better, but it’s too late for me now. I even experience phantom wound & blister pain….I swear its real!
What happens when I can’t see what people are about to do to me and I can stop them from inflicting pain or sticking forbidden adhesives on me and tearing it off? I feel so selfish having these problems and fears, because I’m still alive, and have lived so much longer than my friends, especially the children. I can’t even continue with this insane list of EB woes because whenever I write about it, or watch EB documentaries, it seems like such unrelenting torture, I can’t believe it!
So, the only thing I can do is help where I can and try to leave people feeling a little happier or with a little more joy in their day than before they met me.. I am always grateful for all the support I get both directly and indirectly. Someone asked me once – why are you so happy?? Strange question really, but my secret to success is – I live literally like a 17 year old every single day, it does wonders for my complexion too!!
I have been a part of research trials and I’ve seen the latest and greatest treatments come and go, superseded by better products and research. I’ve been around when research found different gene markers and created more and more sub types of EB.
However, never have I seen or read such research and amazing genetic advances, discoveries and treatments as I have in the last 20 odd years. Such leaps, especially within the last 10yrs.
Amazingly with the power of cooperation and collaboration, the awareness has jumped dramatically thanks to EB Research Partnership right here in Oz.
The future is looking so much brighter than ever before!
Thanks for reading my story and stay safe,