Why World Vitiligo Day made me realise I’d reached a new level of self acceptance
I started writing this feature for The VitLife at George Bush International Airport just after 8pm on Sunday 23 rdJune. I was feeling a mix of emotions as I waited in the airport lounge reflecting on the events from the weekend. I scribbled down as much as I could in my notebook through fear of forgetting anything important by the time I landed in London. I’d learnt so much in 72 hours and I wanted to make sure the best of what I learnt was shared here, with our members.
World Vitiligo Day as a celebration in the US, is now in its fourth year. In 2016 it was hosted in Washington DC, followed by Detroit in 2017, Boston in 2018 and this year, Houston made its way onto the map as the fourth state to welcome guests from various parts of the globe. As it moves to each state, so does the vitiligo support group that hosts it. This year it was the turn of the Houston Vitiligo Awareness Group, a support group set up in 2016 by Diane Wilkes Tribitt, who was keen to make a difference with those living with vitiligo within her community.
Registration for the event opened at 3pm on Friday 21 stJune and was an opportunity for guests to collect their vitiligo weekend goodie bag and the official event t-shirt with the customised message ‘ The Vitiligo Journey — Healing Starts With Me’. After I’d registered and collected my name badge we had a few hours spare, so I decided to wander around Sugarland absorbing the Texan heat (of course, I’d applied factor 50 sun cream to protect my skin!), checking out the mostly boutique shops, bars and restaurants before a quick stop in Starbucks before heading back to the conference venue for 6:30pm.
Back at the Marriott Hotel an influx of guests had arrived in the few hours I’d spent wandering around the City. In the main room, the DJ had been warming up the guests with the latest tunes as many started to take their seats ready for the first session of the evening. Admittedly, I did feel a little anxious as I took my seat a few rows back from the front, simply because I didn’t know anyone and it just felt like everyone else had met each other before and had been friends for years! Watching the guests mingle, introduce themselves and having conversations amongst each other, was a sure sign of just how friendly everyone was.
Dressed in their shorts and t-shirts with their skin proudly on show, kids played on the dance floor like they were school friends who saw each other daily. The truth was, most people hadn’t met before or hadn’t seen or spoken to each for 12 months. I played close attention to what was happening in the room, which started to give me a really good feeling about the entire weekend. There was an incredible energy and I suddenly became excited about who I was going to meet and what I was going to learn over the next 72 hours.
It wasn’t long before a lovely lady approached me and asked if she could take a seat next to me. We got chatting straight away. I sensed she had been before and I wasn’t wrong. She beamed when she spoke about the first time she had attended in 2017. She told me the entire weekend would be life changing and that there is a real sense of togetherness, almost like everyone is family. Turns out she wasn’t wrong. Naturally we started talking about our own experiences with vitiligo — when it had started, experiences with what we thought had triggered it and being around others with the condition. Vitiligo was naturally an instant conversation starter. It was like we couldn’t wait to exchange stories to see just how much our lives crossed and where our journeys differed. It became a common theme throughout the weekend, the conversation heavily focused on how vitiligo has truly made us feel.
Shortly after 7pm, FOX News Presenter, Lee Thomas arrived on stage. With his usual humour, wit and bubbly personality (you may remember Lee was our guest of honour at our vitiligo Society open day last year), Lee was someone the entire audience instantly warmed too. After a brief intro, the lights dimmed down and a video clip was played which touched on Lee’s own story as a public figure with vitiligo, as well as an emotional recap of the 2018 conference in Boston. The touching clip also shared images from the different support groups globally and was a moving reminder as to why the three-day conference is such an important event for the vitiligo community.
After the video, there was opportunity to recognise groups such as the Minnesota Vitifriends Support Group, The North Carolina Support Group and Pen Pal Patch, as groups that had made a difference and unified those with vitiligo. A representative from each group took their position on stage, including myself as a representative of the vitiligo Society. After photos, the fun began as the event hosts appeared on stage in matching purple tutu’s which was an indication that amongst the updates, presentations and workshops, the weekend was also about having fun and what better way to begin by hitting the dancefloor and practicing a few well known Texan dance routines!
Just after 10pm, everyone gathered for the evening session. The guys headed to a meeting room for a session called ‘Iron Sharpens Iron’, whilst the women had a separate session called ‘Survivors’ — a greatly titled session that was synonymous with exactly what these women were. The ladies session was an open forum for us to talk about our experiences and as I expected there was no holding back! We discussed everything from makeup (one girl shared her experiences with a makeup artist from Sephora who suggested she cover the spots on her face), to dating to touching stories where some women had reached their moment of self-acceptance. The session finished at midnight and whilst it had been a long day, I can honestly say I left the hotel feeling enlightened, very welcomed and completely ready for Saturday’s agenda…
Day 2: New treatments, controversial conversations and touching moments….
My alarm went off at 6am. I felt like I’d had around 3 hours sleep as I hit the snooze button on my phone an embarrassing number of times. Of all the days, this was going to be the most informative, educational and the most intense and so I needed to make sure I was up and ready for the 8am start.
In Houston, the heat is intense from as early as 7am. In fact, it was around 34 degrees when I emerged from the hotel ready to book an uber to the conference. Wearing my purple vitiligo T-shirt, I loved that the messaging was noticeable for others to see. It was a great conversation starter as hotel staff asked me why I was in Houston and what the message on my t-shirt meant. It made me realise just how many barriers are broken when people just ask the question ‘what is that on your skin’ and just how comfortable I was answering those questions that make people curious.
I arrived at the Marriott hotel just in time for the group photo. The iconic photo, which was to be taken outside the Sugarland town hall by Rick Guidotti, an award winning photographer and Ted X speaker, included the entire group dressed in their purple t-shirts. Trying to organise over 300 people including children, of course came with its challenges, but we pulled it off with almost everyone looking towards the lens after a quick Mexican wave.
We made our way back across the square to the hotel ready to start the conference. After a welcome speech by Diane Tribitt from the HVAM, we heard from Dr llteft and Vicki Tiahrt who, aside from being major sponsors of the event, gave an update on the work carried out by the Global Vitiligo Foundation, followed by Dr Pandya who gave a presentation on new therapies and treatment during the early stages of vitiligo and why you shouldn’t mix current treatments with Ayurvedic 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). Next to share his insights into treatment, was Dr John Harris, one of the worlds leading specialists on vitiligo. Dr Harris shared the results of Incyte’s clinical trials, 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. 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.
Just after 1pm, everyone gathered in the conference breakout area, spilling into the outside terrace so that they could enjoy the glorious weather. Chosen photographer, Rick Guidotti floated around with charm, capturing moments as people casually chatted with one another, laughed and spoke about what they’d learnt so far. A light lunch was served followed by soft drinks and copious amounts of tea and coffee much to everyone’s delight!
There was a lot to get through, so once lunch had finished we made our way swiftly back to the conference room for the afternoon sessions which included Dr Alanna Bree (emotional and spiritual wellbeing of children with vitiligo), Dr Lisa Schuster (The Psychosocial impact of vitiligo) and the community forum which I had the pleasure of being part of. The panel session, moderated by Lee Thomas and Erika Page from Living Dappled, was a great way for the panel and audience to openly share their experiences.
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 was 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.
Probably one of the most touching moments during the entire weekend was the moving story shared by Vivian, a lovely lady who had attended the event as her first association with others with vitiligo. She had developed her first patch just under 12 months prior and most surprisingly she was a women in her eighties, which is a very rare age in which to develop the condition. She had never been to a global conference before yet she gracefully opened her heart and shared her touching story about how it felt seeing that very first patch appear and how it made her feel. She truly touched everyone’s hearts especially when she mentioned how relieved and empowered she felt being around so many positive and open people who she now shared something in common with. She received a standing ovation for her bravery to share and it ended up being a poignant moment that represented the strength of ‘togetherness’ throughout the entire weekend.
In the evening we brought out our inner 70’s soul as we dressed in our psychedelic colours and platform shoes for the 70’s themed party. This was a chance for us to really let our hair down after a long and insightful day. The evening proceeded with the usual mingling as guests arrived and commented on each other’s attire, before we took our seats at a table and enjoyed a lovely three-course meal. Shortly after, the tables were cleared, the DJ stand was ready and we were all up dancing to the likes of Michael Jackson, Prince and of course Beyonce! I won’t reveal how late the party went on until, but it was a great night, the biggest highlight being when Dr John Harris, Dr Pandya and Dr Pearl Grime took to the dance floor and performed a routine to Good Times by 70’s group Chic. Doctors that dance…who would have thought it!
Day 3: Emotional Goodbyes
Day 3, the final day of the conference started slowly. I could really feel a sadness in the air as it was the realisation that it was the last day….the final few hours before all the attendees would be making the journeys back home. For some it was a short drive home, maybe just a few hours, whereas for the majority, it was a flight back to an entirely different state, or in my case, country. The morning started with a presentation from Rick Guidotti, the founder of Positive Exposure, a charity which celebrates and utilizes the beauty of human diversity. Rick, who had spent the weekend capturing tender moments of the conference as the official photographer, spoke about and shared a number of touching portraits and videos of children and adults with conditions, that he’d had the pleasure of working with before. Following the presentation from Rick, there was a ‘Meet the Doctors’ panel discussion, an introduction of social interaction skills training’ session with Dr Lisa Schuster and Andrea Tan and closing remarks as the event came to a close. All that was left to do, just after 12pm was reveal next year’s location for the event. There was a lot of anticipation, as guests couldn’t wait to hear. There had been much speculation over the weekend, with a lot of second guesses at where it could possibly be. I couldn’t wait to hear and already knew that wherever it was, I’d be flying over for it. As Alicia Roufs took to the stage it was announced that the VITIFriends Vitiligo Support Group in Minnesota were going to be the next hosting city to which the crowd stood and clapped at its announcement.
Following the final announcement, all that was left after an incredible and insightful weekend was to say goodbye to all those I’d met, spoken to, shared stories with and simply been present with. For me, attending the World Vitiligo Conference was life changing and now that I’m back in London, I know that the memories I have brought back with me will be long lasting. Coming back made me realise that I’m still learning about vitiligo. Learning about others with vitiligo and how it makes them feel. Since I’ve been back I’ve met and spoken to three people with vitiligo. The first person I bumped into near where I worked, I noticed he had vitiligo on his face and went straight up to him and had a conversation for 10 minutes. A week later I was in Europe and the hotel barman had vitiligo. I didn’t notice it straight away, but after having a conversation with him and noticing a few small spots on his hands, I felt compelled to ask if he had vitiligo, which he did. The third person was in the airport, she noticed mine first and as soon as she brought it to my attention, we couldn’t stop chatting about our experiences. Those separate experiences made me realise that we do want to talk. That we can be open and that it’s no longer an awkward conversation. We want to notice vitiligo on each other and have a conversation around what it’s like growing up with the condition. vitiligo creates that instant bond. An instant conversation starter that allows us to learn about each other. Times have changed since I was a little girl when having a skin condition was a taboo subject. Now we want to talk. We want to be open and we want others to listen and learn…
Originally published at https://vitiligosociety.org on August 28, 2019 by Natalie Ambersley.
