NOT JUST A PALE FACE – SUN AWARENESS WEEK

Many people may not be aware that this week is Sun Awareness Week (9-16 May) in the UK. I thought I would share something very personal through a blog post, it’s taken a lot for me to write this as it’s something that I have struggled with for my entire life and for a long time I’ve struggled to understand. I’ve learnt the best thing to do if you don’t understand something is to take the time to learn and research about it and I did just that.

I’m allergic to the sun. When you read this you’ll probably have a major flashback to this scene from She’s The Man, I remember seeing the film for the first time and uncomfortably laughing along with my friends. When I usually tell people this they presume I’m lying or being dramatic but I have been living with 2 skin conditions for the majority of my life and I am still learning and coming to terms with it today.

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Polymorphous light eruption (PLE): also known as polymorphic light eruption, is an itchy rash caused by sun exposure in people who have developed a sensitivity to sunlight (photosensitivity). The rash usually appears as red, tiny bumps or slightly raised patches of skin. PLE is a response to sunlight, and as little as 20 minutes of sun can trigger it. PLE can come up even when the light has passed through window glass, and sometimes even after exposure to fluorescent lighting. There are currently no treatments that will be able to cure a patient from the condition.

Solar urticaria (SU): is a rare condition in which exposure to ultraviolet or UV radiation, or sometimes even visible light, induces a case of urticaria or hives that can appear in both covered and uncovered areas of the skin. Solar urticaria is a rare allergy with 3 in every 100,000 having it. There are currently no treatments that will be able to cure a patient from the condition.

I have been living with my allergies for as long as I can remember. It’s a little bit easier that way as it’s always been something I have had to adapt to and work my life around, it would have been much harder to get diagnosed at the age that I am now. It was not genetically passed onto me but that doesn’t mean that I couldn’t possibly pass it onto any of my children in the future. Both of the conditions that I suffer from are common in adults aged 20-40, mainly due to spending a lot of time in the sun or the over-use of sun beds, I couldn’t tell you the amount of people that have suggested sunbeds for me to get a tan, if they had lived the childhood that I had they wouldn’t be going anywhere near one. I was only 6 weeks old when I became poorly, it took a long time to be fully diagnosed with my allergies as it’s very uncommon in children and I spent a lot of time in hospital undergoing examinations, tests and procedures.

In the year 2000 a group of Australian doctors came to the UK to test on individuals with rare skin conditions in London, although this was an adult only study in an adult only hospital and I was 5, I was chosen to go. Throughout my stay I experienced different treatments, some were pain free and others were horrific. I remember them taking me into a room and holding my arm under a UV light, similar to a miniature sunbed. They would do this every day and increase the number of minutes to see how my skin reacted to this, I remember screaming and crying in pain and my mum being so distressed but being able to do nothing to stop it. I remember lifting my arm up and the seeing my skin burnt and blistered away.

Another hospital visit involved them getting something similar to a hole punch and punching it through every layer of skin in my stomach, I’ve still got a tiny scar from this and we named it Lumpy as it used to stick out. Although my skin has caused me physical pain throughout my lifetime I have also suffered emotionally for it due to bullying. I’d have taken the pain from my burns, blisters and hospital visits every day in comparison to how I was made to feel as a child.

“From a psychological point of view skin allergies such as Solar urticaria cause much grief to the individuals. Due to their skin allergy they are put in positions where they are vulnerable to be stigmatised. Not only this, but younger sufferers may be more prone to bullying due to their skin conditions. As a result of their allergy they face real social problems.” – Ms Harvey – Should an allergic reaction like Solar Urticaria be given the same recognition as a terminal disease?

I was always told my skin was beautiful, it wasn’t until I started school and people started to make comments that I stopped believing that. Children at school used to call me Snow White which I loved regardless of whether that intended it to be an insult or not! They also called me a Vampire, one child in my class used to hold sheets of A4 paper next to my face and pretend that it was see through, It’s crazy how things can still effect you from being so small. Now I’m older I realise that children don’t realise that they say or do hurtful things, unfortunately it’s a normal day to day thing for them to point out something that might seem strange or not quite as normal to them but unfortunately it doesn’t change how I suffered.

Although a handful of children were awful to me in Primary School I still thoroughly enjoyed myself, I felt special and it was a nice feeling. Every day before break time I would put my suncream on in the classroom, all of the children would imitate me doing it to and make sure I had got it everywhere and it was properly rubbed in. I wore sun hats to play outside and even went through a phase of having to get changed into full length sun suits to wear in the playground. I had to apply my suncream every 15 minutes so when it came to a 30 minute lunch I’d have to go to the first aid room half way through to top it up. For sports day I wore full length leggings and a long sleeved top, I was so noticeable on all the photos compared to everyone in their P.E. kits! People would stare in confusion at me running about in my own clothes but I was none the wiser, I still got to experience that day like every other child and that was all that I could have asked for.

It’s so easy to make comments on someones appearance without knowing that they are genuinely suffering with something that they cannot change it, I am guilty for it myself . My self esteem and confidence is non-existent when it comes to my skin, I don’t find jokes about it funny at all, especially coming from people that have no idea what I have had to go through in life. It’s such a struggle to explain how it effects me and how I’m feeling and unfortunately people struggle to understand as it’s so rare but the people that care about me try all that they can to understand.

I’m blessed to have my boyfriend, family and friends that really look after me and make sure that I’m feeling okay and I’ve got suncream on, I wear factor 50 in the UK and factor 80-100 when I’m on holiday. They can get over protective at times but it’s only because they care and have all seen me in pain or unwell at different times of my life. I have always tried so hard to not let my skin stop me from doing anything, all I want to do is sit in a beer garden or go to the beach or on holidays like everyone else and I can do that, I just have to take extra care of myself.

I have always tried to make my skin not define me as a person, for the majority of the year I am living with an invisible illness due to the poor English weather, it can be so miserable at times but it makes my life so much easier. When the sun is out I can feel my skin whilst it burns, after 15 minutes outside I can feel little tingles, I have gotten used to this now although it feels strange when i’ve not been in the sun for a long time. Now that I am older my allergies have a lot more of mental effect on me, I suffer a lot more with headaches and nausea and although my skin has aged it’s still comparable to a small childs, I still struggle with my confidence and self esteem especially when it comes to summer and i’m very noticeable in colour to my friends.

Something as simple as wearing Suncream to protect yourself can help prevent conditions like mine that could easily develop into Skin Cancer, I would hate for anyone to find themselves in that position. If you’ve taken the time to read this then please know that it means a great deal to me. I’m hoping that this helps to spread awareness to many people who may not have heard of these conditions before and could possibly help to finding a cure. If you can contribute at all to spreading awareness for Sun Awareness Week then please do. If you don’t understand something then take some time to learn about it, it can really help! Please take care of yourself and your skin!

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