If you are actively part of the Vitiligo community, you’ll likely have found it hard to avoid all the excitement around World Vitiligo Day (WVD), which is celebrated today, the 25th June.
Before we divulge into the meaning around WVD, let’s just go back for a moment and consider just how far we have come since the charity was formed in 1985 when vitiligo was virtually unknown. For many of us back then, having the condition was a lonely experience because there were no opportunities to network or attend support groups, like there is today. Often, the only people we would see were those we might briefly pass in the street and even then it was an unwritten rule that you wouldn’t say anything, rather just walk past and quietly acknowledge to yourself that the person had the same skin as you.
There was very little available in terms of treatment and diagnosis itself was particularly difficult with many GP’s struggling to diagnose patients. Support services were extremely limited, there was no real drive to raise awareness and of course, there was no such thing as social media. We were merely expected to manage our feelings and emotions solely by ourselves with family around us. Things have changed significantly since then, mostly because of social media and the media interest, which has now given vitiligo a platform. Most importantly for us, we now have a month in the calendar when we celebrate our skin. Since 2011, June has become known as Vitiligo Awareness Month amongst the community. It was in June that year, that the first World Vitiligo Day celebrations took place in Lagos, Nigeria where volunteers, dermatologists, motivational speakers, dancers and patients gathered together with the aim to collectively raise awareness. Since then, the initiative has grown to become a global celebration with events taking place all over the world.
Officially celebrated on the 25th June, its sole purpose is to widely broaden the importance of raising awareness, educate others and also highlight some of the challenges we often face, such as feelings of isolation and the associated social implications vitiligo can have on us. In addition to the core aims, many people see it as an opportunity to celebrate their skin, which is incredible.
This time last year I was in Houston, Texas attending the global Vitiligo conference which takes place in a different state within the USA, every year. My first time attending, it was an event that brought so many people together all with an invested interest in Vitiligo. From Dermatologists, health practitioners, dieticians, influencers and those with family members with the condition, it was 3 days of insightful talks, networking and educating us about topics surrounding the condition. The event itself was overwhelming and in some parts, emotional as people opened their hearts, networked and took a genuine interest in each other’s stories.
This year’s main event was due to be hosted in Minnesota, but sadly due to the current pandemic, all events have been moved to a virtual platform with global organisations hosting conferences online. The Global Vitiligo Foundation are hosting a free virtual event on Saturday June 27th June with a great line-up of speakers including Dr Amit G Pandaya who is a specialist in Vitiligo, Professor Yan Valle, vitiligo influencer Andre Joachim and Eric Peacock, the co-founder of My Vitiligo Team. We will also be hosting our first Instagram live from 7pm on our Instagram page @vitiligosociety, talking to Natalie Jones, a UK based Skin Coach.
Why is Vitiligo Awareness Month so important to us?
Firstly, it unites us. Ten years ago there wasn’t for us to unite because social media didn’t exist and the media didn’t cover vitiligo as a topic in the press. Now social media has connected us which means I could be talking to people with vitiligo in the US, Middle East and as far as Australia. Its an emotional thought given this wasn’t possible 10 years ago.
It’s not just about the 25th June. Whilst World Vitiligo Day is officially celebrated on the 25th June (in commemoration of the passing of Michael Jackson) it has become commonplace for those with Vitiligo to celebrate for the month. From the first of the month, influencers, spokespeople and charities will share content and details of planned events and reach out to those in the community for video contributions. It is a way for us to collectively come together to educate those who have no awareness of the condition or want to learn more if they have recently developed their first patch. For many, it’s the month that gives them the incentive to share that first photo on social media showing their skin having been inspired by others who celebrate their skin. It really is a big deal….!
We feel free enough to share who we are with Vitiligo. I’ve been known to save certain photos for uploading on world vitiligo day. Often these are photosthat leave me with a sense of nervousness because I’m unsure how people will respond to the stark contrast between my dark patches and my white skin. But as with many, I share them anyway, because it’s the month that allows us to celebrate our skin and be proud of who we are a community with vitiligo.
The vitiligo community, for me is one of the most supportive, most sharing and most inspiring communities to be part of it. Its been a huge part of my personal journey that has lead me to self acceptance and now with a day that celebrates who we are, right now, there is no better time to have a condition as unique as ours.
Happy World Vitiligo Day.