Hi I’m Emma. I’m the Patient Ambassador of DEBRA Ireland – a role I cherish. I have RDEB (Recessive Dystrophic Epidermolysis Bullosa). EB means my skin is as fragile as the wings of a butterfly. There is no cure or treatment and the only way of controlling the wounds is constant bandage changes every second day. Right now I feel like this has to be the worst skin condition known to mankind. Oh, I’m also 31 years old.
I’ll be honest, I’ve no idea how to write a blog but I’m here lying in bed at 12.40am listening to the new Beyoncé album and I thought “sure I’ll give it a go”!
I was born with EB so I’ve always dealt with open wounds all over my body and lots of pain. But the last few months have been a nightmare. Wounds have exploded all over my body and the pain is completely out of control.
I was admitted to hospital 6 weeks ago with my body covered in infection. I was brought in for 2 weeks of intense IV antibiotics and a massive amount of pain killers…including 3 forms of morphine & ketamine. Yes – Ketamine – That is a horse tranquilliser! But would you believe me if I told you that they didn’t even touch the pain?! There were days that I was hysterical during the bandage change – I was crying, screaming, shaking…and even praying; “Please someone, just help me”. I even had everyone else in the room crying – my mom, my P.A, the EB nurse and a student nurse. That’s so not fair. I don’t want to be the reason people are so upset.
The infection cleared up and I was eventually sent home on condition that I was to stay on a months bed rest. Those words nearly killed me! I’m not a bed rest kinda girl! But what could I do? I wanted to get better and I wanted to go home. I quickly got bored, I didn’t want to be in bed. I wanted to be out and about meeting people. That’s what I love to do. It’s so frustrating. My mind is so active but my poor body just won’t keep up. I had so many plans for when I was better. But that wasn’t to be – I quickly deteriorated at home.
There’s no words to explain the pain that I endure on a daily basis but at the moment the pain seems much worse. My skin is so fragile now, it seems to break at the slightest touch. There are some mornings I’ve woken up and the bed is covered in blood from just turning over during the night. What am I going to do? I really don’t want to live like this. But I have no choice.
So it’s now 1.20am and I’m here back in my hospital bed listening to Queen B herself and one line has jumped out to me…… “I’m gonna keep running cause a winner don’t quit on themselves”.