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Personal Experience

    Personal Experience

    Why It Felt Right To Return To Treatment

    I remember the day I called my GP. It was a Friday morning in January. Typically freezing cold. I was standing in front of a full length mirror trying to choose something that was warm enough to keep out the bitter chill in the winter air. My mind drifted (as it often does!) and I began intently studying the tiny brown spots, on my bright white hands, almost as though visualising life without them. They looked like splashes of paint, disconnected….randomly spread across my hands. Over the years I’d seen new spots come and others go, and it always worried me, that one day I would potentially turn completely white.

    Ironically, the call to my GP came when I had finally reached self-acceptance. I felt less insecure about my skin and recognised that Vitiligo didn’t define who I was. Yet here I was calling my GP asking if I could be referred to undergo UVB Narrowband Treatment….. In doing so, this raised the question of why all of a sudden now did I want to undergo treatment for a skin condition I now finally accepted?

    Treatment doesn’t mean you hate the way you look

    Whilst internally, I’d accepted my Vitiligo, loved its uniqueness and knew that it didn’t define who I was, on the surface; I still wasn’t comfortable revealing my patches. Sure, I was open to wearing t-shirts, maxi dresses and sandals in the summer, however, going that extra mile and openly wearing a swimsuit on holiday or a pair of shorts during the summer wasn’t something I allowed myself to do. I struggled to feel comfortable without my skin being at the forefront of my mind.

    I often visualised my body without its patches. My imagination took me to a place where I felt comfortable. I had clear, flawless skin like my friends and was able to wear whatever I liked without preparing my skin with tanner a few days before the weekend. I didn’t struggle during the summer because I had more freedom with what to wear. I chose beach holidays over City breaks because I no longer saw the sun as a hindrance.

    Discovering UVB Narrowband Treatment

    UVB Narrowband Treatment was suggested to my parents as treatment, when I was 6 years old. In simple terms, this type of treatment entailed standing inside a machine that resembles a tanning booth. Unclothed, you would stand inside for a matter of minutes whilst UVB light filtered across the areas of Vitiligo, stimulating the patches on the skin.

    Whilst it was a relatively safe treatment, there was a 1% risk of developing skin cancer at a later stage and so with me being so young, it wasn’t something my parents wanted to risk and so declined to register me as a patient.

    Fast forward to my 30th birthday in 2012. More patches had come and gone throughout my lifetime. Social networking had become a ‘way of life’ and so I started connecting with others who had Vitiligo. Others with the condition would discuss anything from makeup to fake tan to how it was being a child that was different. However, the one topic that kept reappearing was people’s experiences with UVB Narrowband treatment. I became curious and carried out my own research, wondering whether it was something that might work for me.

    It took just 5 minutes for my GP to refer me

    When I arrived at my GP’s surgery, he took a quick glance at my skin and within a matter of seconds he agreed that I could go ahead with treatment. I’ve had longer appointments when I’ve had cough like symptoms! He asked me the usual questions that I’ve spent my entire life answering such as ‘when did it start’? Where was your first patch? Which areas does it affect now? I then rolled up my jeans for him to take a look at my legs, after which he spun round in his chair and typed up a hospital referral letter.

    I was very pessimistic; after all, I’d spent alot of my childhood going back and forth to Great Ormond Street hospital, for various treatments that had amounted to nothing. Nevertheless, when I noticed the confirmation letter waiting for me when I got home from work one evening, I felt a sense of excitement. I felt like I was once again about to embark on a lengthy journey that would be one of two things; a major success or a complete disaster….

     

     

     

     

     

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    Personal Experience

    Vitiligo: The Early Years

    I became part of the 1% of the worlds population that suffered with Vitiligo, in 1984 at just 2 years old.

    Its life started in the form of a white patch on the back of my hand on my mixed race skin. The patch was a stark contrast against the colour I was supposed to be and hoped I would always be.

    I wasn’t diagnosed straight away. Back in the 80’s when I was a little girl, vitiligo was a relatively unknown condition, especially in the UK, so it was difficult for my GP to say exactly what it was. Apparently, he inspected the little mark on my hand before telling my parents to ‘keep an eye’. No cream. No antibiotics. No nothing.

    So, that’s what my parents did. Everyday they’d inspect my skin, looking for more patches. Any new marks on my skin would instantly alert them and have them questioning whether it was the same as what I already had.

    Being mixed race, my first patch was very prominent. Naturally I was supposed to be caramel colour, a mix of my parent’s genes, so understandably they were paranoid about anything appearing on my body.

    More patches came. Slowly, covering my arms, legs and worst of all, my face. I went back to my GP who instantly referred me to a Dermatologist at Great Ormond Street Hospital because he still couldn’t say what it was. It was there it was confirmed I had Vitiligo and it was incurable.

    ….and so my journey started, unbeknown to me. I went from being an ‘ordinary’ child to a hospital patient, subject to regular skin check-ups and being subscribed regular treatments, to try and slow down the development of more patches. With my skin being so young, my Dermatologist was reluctant in prescribing me anything that could potentially damage my skin, long term. I started using Eumovate, a thin steroid type cream that I applied to the patches on my face, twice a day. We had to persevere. My skin wasn’t going to change overnight, but my parents quickly became rigid about making sure I stuck to the routine. I remember being in hospital a lot….playing with toys in the waiting room as I waited to hear my name called over the tannoy, for yet another test or checkup on my skin.

    I was later prescribed Betnovate for my body, a potent steroid cream that could be applied to larger areas where Vitiligo existed.

    I didn’t realise I had Vitiligo straight away. I could barely talk when I was two, let alone know I had a skin condition! Everyone saw my skin. My parents didn’t hide it and so I quickly thought, that there were loads of us out there with what I had. I realised I was completely wrong when the questions started and kids wanted to know why I was different…..

    I stuck with the treatment. Just a few creams that Mum would rub into my skin. Easy enough. Thankfully, the Eumovate eventually cleared the patches on my face, but I wasn’t so lucky with Betnovate and with the risk of skin thinning, stretch marks and making my skin condition worse, I stopped using it after 12 months.

    Being a little girl with Vitiligo was the easiest thing in the world because I didn’t understand there was something different about me! My parents job was to protect me, meaning I didn’t have to deal with the questions, assumptions and curious stares. I had no clue what it meant to ‘love your skin’ and be confident with who you were, because in my world, I was just being me. Of course this wasn’t going to last. Not in our image obsessed world anyway……

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    Personal Experience

    Why Blog? Why Now?

    When I decided I wanted to blog about my journey with Vitiligo, I didn’t have a clue where to start. I was 33, had lived with Vitiligo all my life and hadn’t delved to deeply into my past as a girl with the skin condition that affected just 1% of the worlds population.

    Revealing who I was as a girl with Vitiligo, meant having to ‘open up’. Opening up about something that was very personal to me and that, for most of my life, i’d deliberately shut out because it wasn’t something I wanted to talk about. I was happy stepping out into the world as someone who ignored it, but deep down, it was impacting who I was and  how I felt about myself.

    In 2013, I was to appear on London Live. It wasn’t a decision I made quickly, after all, I could just about explain what it was too curious strangers, let alone sitting in a TV studio talking a live audience! Nevertheless, after much thought and encouraging words from my Mum, I agreed to speak out….

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