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 was born, the condition was alarmingly present. I had very little skin covering my body at birth, so I was rushed to the RBWH from northwest private hospital. Because of the immediate trauma to my skin, the doctors decided at the time it would be best to make tiny splints for the limbs and covered me head to toe in bandages. They prepared my parents for the worst by suggesting things such as the possibility I may never be able to walk. 26 years ago the medical world had very little knowledge about EB and how different it can affect every child, but thanks to years of fundraising and research, they have improved their practices for managing EB.
Luckily the older I got, my condition seemed to improve. I adapted to situations by managing in unique ways, for example instead of crawling I would get around on my hands and feet and instead of sitting on the ground to play I used to squat just above the ground.
Bandages were a daily task for me, and by the age of about 3 I preferred to do them myself.
Primary school was an interesting experience for me. Kids can be so cruel and they didn’t hold back on me.
I remember girls in my year starting a rumour that I was contagious and running away from me. After explaining that i was born with it and it was genetic, they refused to believe me (at least until they found something else to occupy their minds). I got awful looks from people staring at me which I learnt to ignore, for the most part. I always tried to keep up with the other kids but would often come home with more wounds to bandage up and blisters to drain.
I would always get so frustrated at what felt like a never ending healing process. I remember wishing with every fibre of my being that I could just be normal. I just wanting to play on the monkey bars without blisters, and run around without worrying about falling over and opening a wound.
In my adult life, my condition is very manageable. I do still get blisters with new shoes, and sometimes Ill hurt myself and require dressings, but otherwise my skin has never been better. My scarring continues to worsen but it doesn’t cause me any physical pain, so I try to remember to count my blessings.
I’m now at a time in my life where I am starting to think about my future and children. David and I went to a genetics counsellor the other week, and I received some information that really put things into perspective. I had genetic testing conducted when I was 6 years old. At the time, they only had two confirmed genes they could test that appeared as the ‘gene change’ for EB sufferers. I had neither of these gene changes unfortunately. Now, at the age of 26 I am having further genetic testing and they can now test 27 confirmed gene changes in EB sufferers. Medical research has come miles in 20 years and it is thanks to donations from the public that it has come so far. DEBRA Australia help fund research into the condition, and they are always in need of further support.
