I realised I was different at five years old. If I fell over, it wouldn’t just be a graze on my knee, my skin would actually just rip off.
Only 5,000 people in the United Kingdom have Epidermolysis Bullosa (EB), a rare skin condition that causes wounds and chronic scars – and I am one of them.
I was born with the worst type – recessive dystrophic epidermolysis bullosa – and I have lived with it for 32 years.
When I was a child in the school playground, I had to have an an assistant to help me and my friends had to be very careful when interacting with me. I just accepted it as I didn’t know life any other way. Even by the age of 10, I was used to explaining to everyone what my condition was.
Hospital visits became normal, almost like seeing your second family.
EB means constant pain and scarring has caused my hands to mitten – which simply means when I was younger my fingers were open and I had a lot of dexterity, but with increased scarring the fingers have closed into fists.
Now, I require regular plastic surgery to release my fingers to give me the ability to do basic tasks like hold a fork, type, hold a cup – daily tasks that most people take for granted.
Little things like blinking and eating can be difficult due to excessive swelling and scarring. There have been countless occasions where I could hardly open and close my eyelids, so surgeons had to take skin grafts from my arm or stomach.
I have also had surgery to allow me to eat without choking, as scarring made it near impossible. I was struggling to even swallow a cookie dunked in tea.
As my condition is so rare, most people assume I have burns and the way people react to me really varies.
You have the people who are worried they could hurt me, so I’m always the first to offer to shake their hand.
I’m regularly asked if I was allowed to go to school, or whether I can work, or if it’s too dangerous. At times, all the questions can feel relentless and I just don’t want to talk about it.
Then there’s the people who think they know what is best for me. Uber journeys are often accompanied by the drivers telling me the cure can be found in shrines in the Middle East and Pakistan. There’s also the people who tell me I just need to eat certain superfoods to heal my skin.
They mean well, but I know that there is no cure for my condition yet.
My skin has often been described as ‘fragile as a butterfly’s wing’. However, as an adult in my thirties, I really dislike it when people say, ‘Oh you have butterfly skin’ or ‘You’re a butterfly girl’.
That’s not who I am – I’m like any other woman who has the same needs and desires in life. I just happen to have a very visible condition. I’m certainly no ethereal fairy or unicorn and I certainly don’t need pity.
If I had to be described as anything for the things I’ve dealt with in my life, it would be a lioness.
I’m currently working as a freelance celebrity journalist. I write articles and interview celebrities at press junkets and red carpet events. At the same time I live with family and I have nurses who come to the house to do my dressings.
EB feels like you are in a long-term battle. You are constantly fighting with your skin – the pain, the wounds, the scarring. You have to be strong to cope with it and how I get that power is by being grateful I’m not in a worse position.
I’m able to work and be as independent as I can be. Other people are suffering a lot more.
One of the worst times of my life was last year. I was diagnosed with skin cancer, which I was told was always a risk with my skin condition. My surgeon removed the cancer, and for two weeks I had an artificial skin graft on my whole hand.
I then had to have further surgery, where they replaced this with skin taken from my stomach. This was extremely painful and I was taking morphine every two hours.
The pain after this operation was excruciating and I had the added emotional worry of wanting to know when I would be cancer free. After a month, I was given the all clear and I felt very relieved.
However, living with EB has made me stoic and given me a lot of inner strength. So, when I was discharged, I was back at work a week later – I interviewed Michael B Jordan and Jamie Foxx for their film Just Mercy.
I remember feeling self-conscious because I had a huge, surgical hand bandage on. When greeting the actors, Jamie Foxx opted to shake my unbandaged left hand, but I just kept it simple and went to kiss cheeks with both of them instead.
I find it far easier to educate and talk about my skin in a positive and very real light on Instagram. My Instagram account has attracted people from all over the world. They write to me if they suffer from conditions similar to mine, or even if they just struggle with low confidence.
One woman reached out to me who had suffered sexual abuse and told me that after reading my story she felt she could talk about her own trauma. It was difficult to read her story, but I’m glad I can be a beacon for others.
EB may control how I live my life, but I control my story.
Do you have a story you’d like to share? Get in touch by emailing claie.wilson@metro.co.uk.
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In this exciting new series from Metro.co.uk, What It Feels Like… not only shares one person’s moving story, but also the details and emotions entwined within it, to allow readers a true insight into their life changing experience.
source https://metro.co.uk/2020/08/09/what-feels-like-rare-skin-condition-12811454/
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