I lost all my skin's pigment due to vitiligo – I felt alienated from my culture

Both of my parents are Indian, not that you’d know it from looking at me. 

I was born with brown skin – skin I was perfectly happy in and skin that made up part of who I was.

Then, when I was seven years old, my older sister, Tejal, first noticed a patch of white behind my ear. Slowly, the patches spread, and grew – over my hands, my legs, my face.

So on seeing the BBC headline, ‘Vitiligo: Controversial skin cream may come to the UK’, a rush of excitement shot through me.

As I read through the article, it explained that Ruxolitinib, a cream I’d been aware of for quite a few months now, had proved to be an effective treatment for non-segmental vitiligo – the most common type of the condition, in trials.

About half of those who used it twice a day experienced a significant improvement, and about one in six had almost a complete repigmentation within three months.

I couldn’t stop myself from smiling. Because, as someone who has universal vitiligo – a rare type of the skin condition – and lost all of the pigmentation in my skin over two decades ago, I know just how incredible this treatment would seem to so many people.

Although losing my pigment didn’t bother me in childhood, my parents became worried. They took me to the doctors and my GP identified it as vitiligo. But back in the 80s, they had no idea what that meant or if it could be cured. There were no creams or treatment. 

Relatives and family friends would stare at me, questioning whether it was leprosy or skin cancer. They’d shake their heads and wonder out loud if anyone would ever want to marry me, or if I’d be able to have children. ‘Poor girl,’ they’d tut. ‘You need to do something.’

Not only did this affect my parents, but by the time I was nine, I started picking up on their words too. My skin was becoming a cause for concern and stress for all of us.

Back then, if there had been a cream like Ruxolitinib, we would have grabbed it with both hands. Anything to ‘fix’ me.

Instead, my parents took me to a clinic in India that had been recommended – for five or six weeks at a time – where I was prescribed numerous treatments. From sticking to a strict diet, to putting oil on my white patches and sitting in the sun, I tried everything.

It took over my life. But nothing worked.

By the time I was 21, the vitiligo had spread so much that I had lost all of the brown pigmentation in my skin. ‘Surely it’s better, now that your patches are gone?’ people would smile. But it didn’t feel like that to me.

To the outside world, I looked white. But I wasn’t. I felt lost, like my whole Indian culture didn’t apply to me anymore.

At family gatherings, I felt like I stuck out like a sore thumb. At Indian weddings, I’d hear people whisper how well the English woman had dressed herself in Indian clothing.

For years, I felt lost. When I got married at 22 and moved towns, I didn’t bother to correct colleagues and neighbours who presumed I was white. In fact, when anyone questioned my name, I told them my parents were going through a ‘hippy stage’ when they had me.

I just couldn’t face more questions about my skin. And that is what people don’t necessarily understand about vitiligo.

They see it as a relatively harmless condition that does nothing more than change your appearance. But anyone who has it will tell you, it is far more than that.

Because those changes – the paler patches that can appear on any area of your body – make you stand out in a way that you haven’t asked for. You have to deal with stares, questions, misunderstandings.

And it goes far beyond changing your appearance. It changes your identity. It makes you question who you are. It affects you in ways that are far more than skin deep.

Gradually, I came to terms with my paler skin colour. I realised that my experience with it was so difficult because vitiligo wasn’t talked about – and there I was, not talking about it.

That was why I started putting pictures of me during my teenage years on Facebook and talking about what I had been through – and how I became involved with the Vitiligo Society, who I found on Facebook and started to talk more and more with. 

Through my work raising awareness of the condition with them, I know how excited other members of the vitiligo community are about this new cream too. There are a few other treatments, but this would be a huge milestone.

Ruxolitinib has been described as a ‘controversial’ treatment and there are possible side effects. It can affect the body’s immune system, making users more susceptible to coughs and colds, and during trials, some people developed acne or redness.

Many people with vitiligo may feel that these are small prices to pay to look like – and be – themselves again.

Other people are questioning whether vitiligo needs to be ‘cured’. Model Winnie Harlow has the condition and although admitting it was ‘incredibly isolating’ as a child, she now describes it as her ‘greatest gift’.

‘It has taught me, from the time I was a little girl, to use it as a megaphone: to be louder, prouder, and always fuelled by passion and love,’ she has said in the past. ‘It’s helped me look beyond my own cover – and everyone else’s, too.’

I have always been in awe of Winnie’s confidence, but not everyone with vitiligo feels like that. It’s such an individual condition and the way it affects people is very individual. Therefore, the choice to take or not take the drug is also a very individual choice, including the risks that come with it.

Would I take Ruxolitinib? As I said, 30 years ago, absolutely, I’d have been the first in the queue.

Now, at 43, I don’t think my mental health could handle changing skin colour again. It has taken many years to feel comfortable with who I am – inside and out – and I don’t want to risk that.

Yet, for people who are still on that journey, who want to return their skin to its natural colour, I am excited. Excited for a treatment that might prevent vitiligo dominating someone’s life, the way it did mine.

Of course, Ruxolitinib is yet to be approved by the drug regulator, the MHRA, and the advisory body NICE needs to assess it as well.

But if they pass it, and people use it under doctor’s supervision with their eyes open, then I think a lot of people could be facing a much happier, more confident future. As themselves.  

As told to Sarah Whiteley

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