In this collaborative project dedicated to the World Vitiligo Day 2022, a group of eight diverse people with vitiligo reflects on the reaction they get from people and the changes they would like to see in the society. The stories are accompanied by the striking portraits created by an award-wining photographer Sane Seven whose vilitigo portraits won gold in New York Photography Awards in 2021 and London Photography Awards in 2022.
 
Read interview by Sane Seven to the Muse magazine.

Question: What was the most hurtful reaction from other people?
 
Essel

‘The most hurtful times were when people tried to speak to me of a “cure” or “treatment” or when they felt sorry for me; as if there was something wrong with my skin, something wrong with me. It started when I was 12. This led to me growing up feeling like an embarrassment and a disappointment to my family and skewed my vision of the world. I didn’t understand what vitiligo was when I was that young, I just knew that I had it, and although I didn’t feel different I was made to feel like I wasn’t a normal person. This continued throughout my teenage years and as a result, I developed serious self-image issues which led to angry outbursts and very dark thoughts to the point where I attempted to treat it (current vitiligo treatment can have dangerous side effects). It continues to happen to this day but as I’ve grown older and learned to love myself I don’t react with anger like I once did. To me my skin is my superpower, I wouldn’t be the man I am today without it.

 
Yasmin

I remember once at primary school one of my classmates made a comment aimed at me that no one would want to be with a girl who looked like Batman (referencing the vitiligo around my eyes). Upsetting as it was, I remember my teacher took me to the side and told me that I would be 10 times more beautiful than any woman he would ever Marry. She was amazing!
 

Kyra Jaye

One time I was waiting on the lift coming up from the tube, and this lady was staring at me with a dirty look on her face. when we stepped onto the lift she and her daughter were standing directly across from me and she turned her daughter to face her like I was some scary thing that’s not suitable for kids. It wasn’t fun, It was one of the only times where I’ve felt weird about my skin.
 

Rochelle Richards

The most hurtful reaction to this day is still children. Now I know children are innocent and are generally just curious however it still makes my heart sink a bit being around groups of children. You just never know what they’re going to come out with. One patient I previously worked with shouted “Mummy why is she black and white”? It just draws unwanted attention at the worst of times.
 

Naeve Sanford

A random lady in the middle of the town ran up to my mum and me and started screaming about how abusive it was to dye a girl's hair as young as I was. She also said that it looked horrible and should be dyed back to normal instead of being done “weirdly”.
 

Riya

The most hurtful reactions are the stares and unwanted attention I get. It’s like I don’t know how to respond to those, should I feel insecure, should I just ignore them? It’s something I’m trying to figure out.
 

Reuben Sam

The reaction that struck me the most was when somebody showed aversion towards me. In my little mind, I was making them uncomfortable just by the way I looked, and I was feeling responsible for it, which made me incredibly sad.
 

Question: What change would you like to see for people with Vitiligo in our society?

Essel

My genuine wish is for people to be comfortable with who they are and comfortable in their own skin. I hope this can be achieved by raising awareness of what vitiligo is to the general public. This condition, something I now consider a blessing, had a severe effect on my mental and personal development and even to this day I still sometimes struggle to see myself as a normal person.

I don't want people to go through what I did, especially those who develop vitiligo at a young age like me. It is all too common of an occurrence when people who ask me about treatments then go on to explain that their child has vitiligo and they're worried about them. This is especially the case in ethnic minority families where there is sometimes more judgement due to pressure on reputation. Vitiligo should not be seen as such a taboo, especially when it is simply purely cosmetic; it is just stigmatised. Such stigmatisation is irrefutably a detriment to a child's development. People need to become more aware of vitiligo; I genuinely find it astonishing how little people understand it - I've even had people ask me if it's infectious!

I want people with vitiligo to embrace their adversity, once I realised that my adversity doesn't necessarily need to be something that holds me back, it became fuel for the way I’m motivated to change the world and to help others.
 

Yasmin

I would like to see a world where people see vitiligo for its pure beauty and not just something that ‘’needs to be cured’or ‘healed’. The vast differences and uniqueness you get between one person's pattern to the next are beautiful. And I think we should see more of that!
 

Riya

As for society, the change starts with you. If you can accept yourself completely, others around you will too. Society just needs to get over the pre-notions of beauty. I mean beauty is far too subjective to ever feel ugly. Isn’t it?

Rochelle Richards

The changes I would love to see for people with vitiligo are:

• Free sun cream on NHS
• More models with Vitiligo in the main stream fashion
• More children's books with characters that have vitiligo or any other visual difference
• I’d like for Vitiligo to be recognised as simply just a condition. We are often spoken of as “sufferers”. I don’t suffer from Vitiligo. I have Vitiligo; it doesn’t have me.
• Accessible and decent make-up on the NHS free. Not for me but for people who are at the beginning of their journey. The cheap stuff they have available resembles thick horrible face paint.

Eva Khyne-Sam

I hope society can continue to make a safe place for us to feel confident and comfortable in our skin. I would love for the diversity to remain strong, to see more of us having the same chances in jobs and careers as everyone else. I’m a Model and I can say my Vitiligo certainly stands me out from the crowd. I love it. That’s my USP.
 

Kyra Jaye

I want more representation for people in society that look like me. I know that a lot of people with vitiligo aren’t comfortable in their skin when they get diagnosed and I think being able to see people that look like them in the media will help with their confidence in their skin.
 

Naeve Sanford

I’d love to see people acknowledge that it’s not something we can control and ask what it is is perfectly okay! And feels so much nicer than a rude stare.
 

Reuben Sam

I would love to see more education about diversity in school, and media. We are all are all genetically, and biologically different. Even twins have their own unique traits. However, one thing we all have in common, with Vitiligo and without it, is that everyone is worthy of love and support. How can this be achieved?
 

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