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World Vitiligo Day 2019 – The Best Bits

Just over 6 weeks ago, I flew to Houston, Texas for the 2019 World Vitiligo Day Conference. It was my first time attending the annual event, which takes place in a different US state every year. Held at the Marriott Hotel in Sugarland, a beautiful city southwest of Houston, the conference was attended by just over 300 people including leading doctors, dermatologists, advocates, ambassadors, families and most importantly, those living day to day with the condition. Now in its forth year the conference was hosted by the Houston Vitiligo Awareness Group, a support group set up in 2016 by Diane Wilkes Tribitt. In previous years it has taken place in Washington, Detroit and Boston.

Below are some of my favourite highlights from the 3 day event that brought the Vitiligo community together….

Being among 300 people with Vitiligo

As I packed my suitcase four days before flying out for the conference, thoughts of what it might be like crossed my mind. How many people had registered to attend? Would it be people mostly looking for answers in relation to a cure? Would the main focus be on the talks and presentations by the leading doctors as opposed to those living with the condition? I honestly didn’t know. Looking back and reflecting on the entire three days once I’d got back to London, I realised that its impossible to comprehend what it feels like to be around 300 people that have the same condition as you.

I arrived at the Marriott Hotel in Sugarland on Friday 22ndJune – the day of registration. As soon as I walked into the hotel, I noticed two children playing by the seating area with Vitiligo and also a man and woman speaking on the sofas. As I queued to ask where the registration desk was, in front of me was another man with Vitiligo. In that quick moment, even though I hadn’t spoken to any of them, I suddenly felt an ‘invisible bond’ as I realised just how amazing it was to see other people with Vitiligo, other people that looked like me.

Being amongst so many with Vitiligo over the entire weekend was incredibly overwhelming. I loved that everyone was so positive and open about their experiences. Everyone was willing to offer advice, share their stories and support each other, which created a real sense of community and togetherness. I felt as though I was amongst people that not only understood me but could also relate to me. I made so many connections and felt inspired by everyone I had a conversation with. The one thing everyone seemed to have in common was passion. A passion to talk, share and help those around them. It was one of the ‘safest’ spaces I’d been in for a long time that allowed you to talk freely about your feelings, concerns and on some occasions, conversations you might not have had with friends or family in the past.

Presentations by leading Doctors in the Dermatology field 

Hearing from the leading Doctors and Dermatologists that specialise in the treatment of vitiligo is significant to why the World Vitiligo Day Conference is so important. Dr John E Harris, Director of vitiligo clinical care and research shared the results of the Incyte clinical trial, a two-year long study in which patients tested a topical cream called Ruxolintinib (which is part of JAK inhibitors group of medicines) and which could potentially reverse vitiligo, whilst Dr Pandya gave a presentation on new therapies and treatment during the early stages of vitiligo and why you shouldn’t mix current treatments with Ayurveda medicine. He also spoke about the use of Jak Inhibitors, which can reduce immune responses and lead to improvements in autoimmune conditions such as vitiligo. An interesting part of his presentation was when he spoke about reducing the triggers of Vitiligo i.e. avoiding trauma to the skin, reducing an immune attack on the skin and how to increase melanocytes and melanin production (phototherapy, skin grafts and cellular grafts). Well respected Dr Pearl Grimes, a Dermatologist and Director of The Vitiligo & Pigmentation Institute of Southern California, spoke about coping after diagnosis and how to manage Vitiligo emotionally. Dr Grimes also highlighted the five stages of grief, which included denial, anger, bargaining, depression and acceptance, which is believed are the stages those with Vitiligo will often pass through. For me, in that moment of listening, it felt like a ‘light bulb’ moment as I recognised and reflected on how those stages had passed through my life and finally lead me towards my current state of acceptance.

Group Photo on the steps of City of Sugarland City Hall

At around 8am on day 2 of the conference all attendees made their way to Sugarland City Hall for the group photo. Wearing our ‘The Vitiligo Journey – Healing Starts With Me’ customised t-shirts, all 300 attendees gathered on the city hall steps ready to be photographed by award winning photographer, Rick Guidotti. Of course, with so many of us it was likely to take some time to get us all looking at the lens, but we did pretty well, so much so, it turned out to be the iconic image of the entire weekend that quickly made its way around social media. It was a poignant moment that showed unity, togetherness and a community that wholly supports each other. An incredible moment for everyone, with or without Vitiligo. 

The 70’s themed party where the Doctors proved themselves on the dance floor!

There’s probably nothing more fun than a themed party and with the 70’s being the inspiration, it was a great opportunity to resurrect our flares, psychedelic colours and afro wigs and let loose to the sounds disco, R&B and funk music. Probably one of the most entertaining moments of the evening (and the entire weekend!) was having Dr John Harris, Dr Amit Pandya and Dr Pearl Grimes join us on the dance floor and show us their smooth moves to 70’s classic ‘Goodtimes’ by Chic. I’ve definitely never experienced ‘dancing doctors’ before but it was a poignant moment which signified, that amongst the research and extensive work they carry out in relation to Vitiligo, they are truly one of us. I hope we see more of that next year!

 The Community Panel

The community panel session, which I was also part of, alongside some notable Ambassadors was a great opportunity for ‘real talk’ as we discussed a range of topics that are frequently raised as points of discussion amongst the vitiligo community. Moderated by TV Broadcaster, Lee Thomas and Erika Page from Living Dappled, the hour-long session was a great opportunity for open conversation and interaction with the audience. One of the most controversial topics often discussed is whether vitiligo is considered a disease of skin condition. Many feel offended by the term disease because it suggests that vitiligo is contagious and it just sounds like a rather ‘harsh’ way to refer to vitiligo, but after much discussion around individual preference we had to accept that how vitiligo is defined is down to one very important factor; funding. In the US, in order to receive funding for research and ultimately a cure, vitiligo needs to be referred to as a disease. By not calling vitiligo a disease would mean there would be no financial backing by the government or healthcare system. Also discussed were the effects of bullying and our thoughts on camouflage makeup, whilst Erika shared how she finally plucked up the courage to clear her shelf full of fake tan bottles and live a life without daily application of self tan. The session, which lasted just over an hour was incredibly interactive and engaging and revealed some really interesting points around the many themes surrounding Vitiligo.

Next year, The Global Vitiligo Foundation in Minnesota will be hosting the 2020 conference. Check out https://www.wvd2020.com for more details.

 

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