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‘From The Moment I Got My First Patch Of Vitiligo, My Parents Knew Life Wasn’t Going To Be Easy’.

 Posted on 20th February 2024  7 minute read

Just over 10 years ago I spoke out on London Live about my journey with vitiligo and it was one of the most daunting things I’d ever done and it was all down to the Vitiligo Society! Since then, I have shared my story with multiple publications and media outlets who have provided me with an opportunity to share, educate and raise awareness.

In 2015 I wrote a detailed account of what it was like living with vitiligo and I shared it in Dispatches. For those of you who have been on this journey with us for many years, you’ll remember Dispatches was our printed magazine where we’d share updates and stories like we do in the VitLife today.  I still love flicking through old issues – not only does it feel nostalgic, but it highlights just how far we’ve come as a community and in raising awareness. Here is the account that I shared just under 10 years ago which reveals a lot about how I felt about my skin at the time….

I was just three years old when the first patch of vitiligo appeared on the back of my hand. No bigger than a small coin, it unexpectedly appeared without warning. When my parents first noticed the patch, they weren’t overly concerned but took me to the Doctors anyway just to be safe. As they had suspected, the Doctor wasn’t able to say what it was and simply told my parents to ‘keep an eye’ on it and to bring me back if the patch grew.  

Over the course of two years the inevitable happened and more patches started to appear all over my body, which became unsettling for my parents. Given the pace at which the patches were spreading they quickly took me back to the Doctor who was still very puzzled by what it was. For that reason he referred me to a Dermatologist and within a few weeks it was confirmed that I had vitiligo and it wasn’t curable. My parents were naturally worried about what this would mean for growing up.

Being so young, my treatment options were limited. I first tried steroid creams, which we hoped, would slow down the appearance of more patches, but it didn’t work. Following this I tried tablets, topical creams, homeopathy and then back to steroid creams, but nothing seemed to work.

The visibility of the vitiligo on my skin made it very clear that life wasn’t going to be easy in a world where it wasn’t cool to look different. Being mixed race meant that the white patches were a stark contrast against my caramel coloured skin. My parents knew that sending me to school in a uniform that exposed my arms and legs, could potentially lead to comments and stares from the other kids.

I loved school. I had a small group of friends, interacted well and gravitated towards the kids that were just as quiet as I was. Being so young and innocent, I didn’t understand what it meant to be different. I knew my skin didn’t look the same as all the others kids, but I didn’t realise it was something that would make me feel so alone in the long run. My skin became an easy target for the kids with a spiteful tongue. I recall one kid in my class avoiding touching me because he ‘didn’t want to catch my skin’ and there was the odd time when I was compared to a zebra or cow because of the different colours. It did make me question my skin but because my parents were always telling me how beautiful I was, I didn’t really let it get to me.

My teenage years were particularly tough. At a time when I wanted to fit in the most, my skin didn’t allow me to. I was incredibly self-conscious about its appearance and spent a lot of time questioning myself and how I looked. I didn’t feel pretty like the rest of the girls at my school, didn’t date boys and tried to pretend that it didn’t exist. But it was impossible, vitiligo felt like a curse. Swimming lessons bring back difficult memories. Every week before the start of the lesson I would run to the changing room so that I didn’t have to undress in front of the other girls. I was always last around the pool because I would prolong having to the leave the changing room for as long as possible. Sometimes I would forge notes from my Mum excusing me from the lesson just so that I could avoid the stares and discomfort.

My parents didn’t encourage me to wear makeup during my school years but as soon as I left school and got my first part time job, I became obsessed with makeup brands. The feeling of putting foundation on my face that covered the patches around my eyes allowed me to hide it from the outside world. I also relied heavily on fake tan, which was becoming really popular in the UK. Every girl wanted a year round sun kissed glow – me included. I’d often go for the darkest shade of tanning cream, which would turn my skin orange, but I didn’t care, it was the only way I was able to feel normal.

Explaining what had happened to my skin was always a struggle as I didn’t really understand the medical side of vitiligo. If anyone asked me what it was, I’d stumble over my words and blurt out how my skin had suddenly started turning white when I was three. I could feel myself turning embarrassingly red as I eagerly tried to change the subject in case one question led to anymore.

Just after my 30th birthday, I decided to try treatment one last time. My skin was really getting to me and the fact it was so unpredictable made matters worse. It had negatively impacted so many parts of my life that I was prepared to do anything to try and go back to the skin colour I was born with. I’d heard about UVB Narrowband treatment through various support groups and was keen to understand if it would be an option for me. The reviews from other vitiligo patients were very mixed with some saying they had re-pigmented significantly well; whilst others said it hadn’t made a difference to their vitiligo. Given how bad my vitiligo was (I was 70% white), I had nothing to lose so I asked my GP to refer me for treatment, which he did.

The treatment itself took a huge amount of commitment. Twice a week, I would leave home at 7am for a 20-minute hospital appointment, which would entail me standing inside a large tanning booth filtered with UV light. In the first few weeks there wasn’t much change but after 2 months my skin started to repigment and my natural skin colour started to return. I was shocked and excited and couldn’t wait to see what my skin would look like after the 12-month treatment plan. It felt like a miracle was unfolding right before my eyes.

My skin changed significantly during the treatment and I’d gained a new found confidence that allowed me to start enjoying the things that I’d avoided before. I brought a huge collection of swimsuits eager to hit the beach, started wearing summer clothes, the negative self talk lessened and I didn’t feel as self conscious about my body.

In 2013 I was invited onto London Live (a news channel in the UK) to talk about what life was like living with vitiligo. Being under the spot light and speaking on live TV about something that had affected me emotionally, physically and mentally was incredibly difficult, nevertheless, it turned out to be one of the most liberating experiences of my life and became the turning point to me starting to love my skin.

After appearing on TV others with vitiligo started to reach out, sharing with me that they too had vitiligo and had often felt isolated and alone like I did. It was such a relief to know I wasn’t going through this alone and that I’d found a community of people going through exactly what I was.

In 2016 I started an Instagram page with the view of sharing my journey with Vitiligo. I wanted to talk about everything – building my confidence, treatment, dating, being a child with the condition and life with vitiligo as it is today. I wanted to be authentic and empower others to celebrate their skin and give those who were at the start of their journey, some hope.

Gaining the confidence I now have has created some wonderful opportunities. I’ve shared my story publicly in various magazines, featured in an advert for Dove and taken part in photoshoots to empower others with the condition. I am also a Charity Director for The Vitiligo Society, which has brought me closer to the community and am an ambassador for Changing Faces. It’s opened so many doors and created some incredible opportunities.

Being able to connect with others with vitiligo has been the biggest blessing and in all that I’ve done publicly and the work I’ve done on myself, I’m mostly grateful for becoming part of a community that empowers each other and reminds us of the beauty in our skin.

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