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Personal Experience

Life With 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. 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 in the long run. 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 applied as instructed twice a day. I remember being in hospital a lot….playing with toys in the waiting room as I waited to hear my name over the tannoy, instructing me that they were ready to perform another ultra violet x-ray to see if any more patches had formed.

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! My parents done the job of protecting 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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