Growing Up With Epidermolysis Bullosa

By Maya Spencer Berkeley

Epidermolysis Bullosa (EB) is a group of rare genetic skin conditions which cause the skin to blister and tear at the slightest touch. There are three main types; Simplex, Dystrophic and Junctional, that affect around 5,000 people in the UK and 500,000 people worldwide. Far from merely a genetic condition, for me, Recessive Dystrophic EB is a reality of everyday life.

Photography by Rosie Foster

Characterised by a lack of adhesion of the skin under the basement membrane, the severity of the condition varies widely. As well as affecting the skin, EB can also be the cause of other internal problems and infections that can drastically limit the lives of some sufferers. It is common for people with REB to have problems with their oesophagus. Narrowing can occur which leads to trouble swallowing food, in some cases, it can prevent you from eating solid food entirely. I count myself lucky enough to have a relatively mild version of EB. However, the severity tends to worsen with age. Not only this, but I am coming to terms with the fact that people with RDEB have a considerable chance of developing a form of aggressive skin cancer before the age of 35.

Growing up with EB presented many challenges for me. Being able to play outside freely is something most children and parents take for granted, but I had to wear padding all over my arms and legs to be able to do the same ‘normal’ things as everyone else did. 

I was so ashamed of my skin during my teens I did everything in my power to hide it. I think the hardest thing for me was that no one understood or had any knowledge about my illness.

Maya Spencer Berkeley

As I got older, starting secondary school brought on new challenges. Kids can be harsh, especially about things they don’t understand. Of course, they didn’t understand my condition. I was so ashamed of my skin during my teens I did everything in my power to hide it. I think the hardest thing for me was that no one understood or had any knowledge about my illness. Keeping it hidden was my only defence mechanism, it meant I didn’t have to try and explain such a complex condition, (that I didn’t even fully understand myself) to every person who saw it. 

I was fortunate enough that most of my teachers were aware of my condition, they let me alter my uniform to ensure my affected skin was unseen. But, inevitably, it was impossible to keep it completely concealed. One time I remember being in my Design & Technology class, talking to someone with my hands on-show (covered in scars and blisters). Another classmate came over, spotted my skin and suddenly jumped back, whispering loudly; “Errrrr look at her hands!” I was mortified. I burst into tears, left the room and rushed home. 

That day has always stuck with me. Looking back, I didn’t even talk about my condition with my friends. They all knew it was there, but it was never discussed. I was too embarrassed by it to open up. I definitely experienced a shift after I had finished school as I became more comfortable with it. Since then, I’ve made more effort to explain my condition.

As a sufferer of EB, my daily routine involves many elements that others don’t have to think about, as a huge chunk of my day is spent managing my skin. Each day begins with the removing of all my dressings and running a bath with Milton (baby bottle steriliser) and sea salt in it. Once I’ve checked the temperature isn’t too hot — which can result in my skin flaring up — I get in and soak for at least 20-minutes. I then shower using a special soap before drying and setting up all the relevant instruments and dressings needed to bandage myself up. 

I use a small needle to pierce and drain any blood blisters I have on my legs. Once that’s done, I can apply an antiseptic gel to all my open wounds and carefully cream around them. Next, I wrap my legs in rolls of a dressing. My legs being as long as they are, I need a lot of rolls. This is a tricky part of the process as the bandages need taping after being put on my legs, before another separate length of tubular bandage goes over the top.

Once this is all done, I have the added challenge of putting large plasters on the back of legs and my bum/lower back, usually involving me sitting/standing in very awkward and uncomfortable positions. The final stages are creaming the rest of my body to remove all the dead skin that has dried out after my bath and checking the rest of my body for any open cuts or wounds. Any left uncovered means my clothes will stick and cause further trauma to my skin.

Aside from day to day physical difficulties, I think it’s important to talk about the psychological effects of having a chronic condition like mine. Up until very recently, all I wanted was not to have EB. I just wanted to be normal and would wish for it constantly. Every time I blew out my birthday candles, every time I picked a dandelion and blew the seeds away, every eyelash I blew off the back of my hand and every time I caught the clock at 11:11. My one and only wish were to be free of this condition that I believed was ruining my life. I felt so trapped. 

I was so unhappy that for years, I battled depression. I dropped out of school at the beginning of 2014 and decided it was time to work on getting myself mentally well. I had to try and learn and accept that I would have EB for the rest of my life. During the last few years, I have come to realise that if I don’t accept myself for the way that I am, or I spend too much time hating things I cannot change, I will never be happy. That’s not the way I want to live my life.

For a long time, I’ve wanted to try and do what I could to raise awareness about EB and fundraise to help children born with the condition that at times, can be life-threatening. Although, I was never quite sure on how to go about doing it. 

In November last year I received some photos back from I shoot I did for girlgaze by Sophie Mayaanne. I was surprised at how much I loved them. All my affected skin was on-show and I didn’t care, I looked good! That was a huge turning point for me, I decided to stop looking at my EB as a negative. On the 24th of November last year I received photos back from I shoot I did for girlgaze. 

I’ve come to realise I could use the fact I was a model with this rare condition for good, promoting EB and educating people so that others don’t have to struggle the way I did growing up. Raising money so that more research can be done is another one of my priorities, as the goal is finding ways to improve the quality of life of EB sufferers. So, I am now on a mission to do everything I can, using my social media platform to raise awareness and possibly inspire others to accept themselves, “imperfections” and all!

My advice to anyone struggling with certain aspects of their appearance is not to hide. Own your ‘imperfections’. Be confident. Give humans some credit and trust that they will see you for the incredible person you are.

Maya Spencer Berkeley

The response to my shoot with Sophie Mayaanne on Instagram was overwhelming. Since the photoset went public, my account gained over 12k followers, I received thousands of positive messages and I have since been approached by various strangers telling me how inspiring my story has been for them. Following my shoot for girlgaze, I did this short series with Rosie Foster, I’ve never felt so empowered. 

I am still so shocked by how positive the reaction has been since I’ve “come out” about my skin. I wish my depressed and ashamed younger self could have known what things would be like now. My advice to anyone struggling with certain aspects of their appearance is not to hide. Own your “imperfections”. Be confident. Give humans some credit and trust that they will see you for the incredible person you are. It’s not an easy road learning to accept yourself, but it’s worth it, I promise you. And if all else fails – fake it till you make it!

Obviously, we all have days where we feel bad about ourselves. That’s okay. Having down days is okay. Don’t beat yourself up. Just look after yourself. Shut yourself off from social media for a few hours. Watch something on Netflix. Read a book. Do something creative. Write a poem. Make yourself a cup of tea and something yummy to eat and relax. At the end of the day, your body and mind deserve to be cared for.

Epidermolysis Bullosa (EB) is a group of rare genetic skin conditions which cause the skin to blister and tear at the slightest touch. There are three main types; Simplex, Dystrophic and Junctional, that affect around 5,000 people in the UK and 500,000 people worldwide. Far from merely a genetic condition, for me, Recessive Dystrophic EB is a reality of everyday life. 

For more information on EB please visit Debra.

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