This is my story of how I created the Vitil-i-go campaign, to help raise awareness of vitiligo and bring our community together…

A wise man once told me that “If it was easy, everyone would do it”. That is a motto that I have lived by, especially in the last 8+ months when I have been juggling a new, demanding full-time job, two even more demanding twins 😉 as well as trying to launch and host “Vitil-i-go” meet-ups for The Vitiligo Society. But it has all been worth it, and I hope that you agree, we have a bright future ahead of us.

The concept of “Vitil-i-go” is something that I had been dreaming of for over 20 years, but it wasn’t until I found The Vitiligo Society and fellow volunteer Dale Biermann that the dream could start to become a reality. Like myself, Dale had struggled to come to terms with his vitiligo, and had found that it was having a massively negative impact on his well-being and self-esteem. I had once achieved sporting success (including several times being National and English Schools Cross-Country Champion as a schoolgirl, and a Biathle Junior Women’s World Champion in my early University days), but walked away from competitive sports and shied away from social events largely because of my vitiligo. It was affecting my everyday life – both inside and outside of work – and my self esteem was at rock bottom. I therefore felt that something had to change, not just for myself and my young family, but because I didn’t want others to go through the same process. In late 2021, I found The Vitiligo Society and we began to shape the “Vitil-i-go” concept.

Both Dale and I believed that by providing more community engagement events for vitiligans we could simultaneously raise awareness of vitiligo and support others with the autoimmune condition – helping to turn social engagement fears into a positive “I-go” attitude. Combined with my innate passion for sports and knowledge of both the mental and physical benefits of regular exercise, Dale and I landed upon the initial idea of “Vitil-i-go” meet-ups at local Parkruns – running once a month following the launch at Bushy Parkrun, Teddington (London) in June 2022.

On Saturday 18th June 2022, the first “Vitil-i-go” meet-up took place in Bushy Park, Teddington (London). Despite the fear of my vitiligo being “on show” with bare arms and legs (for once, without fake tan or camouflage cream), I arrived at the Bushy Park Parkrun early to meet with fellow volunteer Dale and two surprise participants: family members who had seen the “Vitil-i-go” launch promotions on social media and had decided to join the meet-up. What’s more, unknown to me before the meet-up, these family members also had vitiligo! It’s difficult for me to put into words how emotional this first encounter with vitiligan family members was… I cried a little, hugged them much too tight, and just didn’t know where to start with the years of unsaid conversations.

It was a glorious morning in Bushy Park, and you could feel the excitement as everyone began to congregate near the start line for the parkrun. I was chatting so much, however, that I missed the start! My family members, aware of my passion for running, urged me to catch up with the front runners. I got carried away with this initial fast pace – fueled by a heady mix of both fear and excitement (similar to my earlier days of competitive sports) – but questioned whether I could sustain the pace for the full 5 km so eased back to a more manageable pace. I’d clearly also forgotten the rule about no/little food before a morning run so I had to work through a painful stitch between 2 and 3 km – the bagel was sitting heavy!

At around the 4 km marker I saw a lady walking, trying to find her running legs again, so I passed on some words of encouragement and we ran along together for a while. In turn, she gave her thanks and encouraged me to push ahead to move away from her. That is one of the things that I love most about Parkrun, it is such a friendly and supportive environment. I had forgotten what a lift it can be to come together with others in sport.

Afterwards, with Dale and I beside The Vitiligo Society banner, we had some great conversations about vitiligo – some with people who had never heard of the condition before, others who knew someone with vitiligo. While the emotional and psychological impact of living with vitiligo was easily acknowledged, the more surprising news to the listeners was that there is still relatively little known about the causes of vitiligo, still no cure, and an increased likelihood for developing other autoimmune conditions (perhaps not so visibly obvious as vitiligo, but each providing their own unique daily challenges).

All in all, a very successful first outing for “Vitil-i-go” I would say. Promoting awareness of the condition, as well as providing a friendly and supportive environment for vitiligans to embrace the “I-go” spirit of “Vitil-i-go”.

I was so proud of Dale and I for getting out there at the “Vitil-i-go” launch in June 2022. On a personal note, I was putting my vitiligo on show for the first time since … well, since I can remember … but in all honesty, I was also extremely relieved when the meet-up was over and I could once again cover my vitiligo with long sleeve tops and joggers. I was completely and utterly drained. Not so much from the physical exertion of the run, but from the emotional and mental effort required to get back out there at these sorts of events, and for the first time in my adult life, without my vitiligo disguised by fake tan or camouflage creams.

The effort and energy that the initial “Vitil-i-go” meet-up had taken out of me was astonishing. As I mentioned at the start of this round-up, a wise man once told me “If it was easy, everyone would do it”, and I certainly felt that my heavenly Dad was looking down on me with pride in that moment – for pushing on through the toughest of times. He was always my biggest advocate in the sporting arena, and I only wish that he had been around to see me take the first steps towards accepting my vitiligo. I ran that first Parkrun thinking of my Dad and many other family and friends lost during recent years; I used their memory to remind me that life is too short to not accept myself and my vitiligo.

Over the next few months it did become slightly easier to show my vitiligo at the “Vitil-i-go” meet-ups – each one taking progressively less of a toll on me emotionally and mentally. I also started to show some of my vitiligo patches (hands, lower arms) outside of the “Vitil-i-go” meet-ups. Additionally, if I noticed someone looking at my vitiligo (e.g., on the school-run with the children), I felt happier to talk about it. Slowly, ever so slowly, it felt like a huge weight was being lifted off my shoulders. I was liberating myself from so many years of suppression.

I really hope we can grow Vitil-i-go and have other volunteers help arrange meet ups at their own local ParkRuns, with the help of the Vitiligo Society, it’s so easy to do – and you just might help someone get the confidence to leave the house and fall in love with running, and their skin.

Email hello@vitiligosociety.org.uk for more information about the campaign and how to get involved.