This past weekend, 314 patients, advocates, dermatologists and researchers met in Worcester, Massachusetts for the 2018 World Vitiligo Day conference – making the event the largest gathering dedicated to vitiligo to date.
Over three days, 23 speakers gave updates on groundbreaking research, shared media-grabbing projects and campaigns, and told heartfelt stories about the realities of a life with vitiligo. Award-winning fashion photographer Rick Guidotti – who has shot for Vogue and Marie Claire just to name a few – snapped powerful images of patients. Children with vitiligo bonded over arts and crafts. Four patients underwent skin blistering so doctors could share real-time results about their vitiligo. Bloggers, vloggers and support group members snapped selfies and raised awareness with #WVD18Conf. And in-between it all, patients and families connected, cried, laughed and celebrated. The energy in the room was electric – a powerful cocktail of pain fueled by purpose.
Of the 314 attendees, 250 were patients and families, including 27 children. Speakers, doctors and patients arrived from all over the world, with representatives from the United States, Canada, Brazil, Guadalupe, Australia, France and Kazakhstan. Supporting the entire event were the Global Vitiligo Foundation and 12 pharmaceutical companies who sponsored the weekend, making it more affordable for patients and families to attend.
Here are the top ten moments of the conference:
A 14-year-old shared her story – and got a standing ovation
Among many of the teens who shared their stories about living with vitiligo was fourteen-year-old JáHirah Hawthorne who has had vitiligo since the age of four. In the fifth grade, JáHirah played her first basketball game. When the team arrived, there were stares and whispers as the teams lined up to pick who they were going to guard. No one wanted to guard her, said JáHirah, choking back tears, until one girl volunteered and apologized for how her teammates had acted. Heartbroken from the experience, JáHirah never wanted to play a sport again, but that moment taught her how to cope with challenges. Today she’s participated in a fashion show and is looking forward with confidence – and never looking back.
300+ people stood in Wonder Woman poses
Hands on your hips, standing tall with your chest pushed out and legs slightly spread – that’s the Wonder Woman pose, a high power pose proven to boost confidence. Vitiligo can have a negative impact on your quality of life, self-esteem and confidence and that’s why psychosocial intervention is being added to the pillars of vitiligo treatment that have previously included only medical therapies. A team at UT SouthWestern recently put psychosocial therapy to the test during two six-hour workshops where vitiligo patients were taught effective communication skills and coping strategies – including the Wonder Woman pose. The results, shared at the conference, showed 100% positive feedback from patients, who experienced higher self-esteem and ability to cope following the session.
Doctors shared updates on groundbreaking research – including results of a sea salt treatment
Can sea salt baths increase the time that vitiligo treatment will last? The answer might be yes. While light therapy has already proven to be effective, Dr. Aliya Kassymkhanova from the Republic of Kazakhstan did a study that tested light therapy in combination with sea salt baths to mimic the healing effects of Dead Sea therapy. Tested on 298 patients over an average duration of 13 months, the results showed that that the majority of patients not only saw repigmentation, but the pigment stayed for up to 10 years. While this treatment combination will continue to be tested, the study shows promising results – and was just one of the updates that came out of the research presented at the conference.
Dr. John Harris gave a tour of his lab – which included a hammock
The 2018 conference took place at the University of Massachusetts’s Vitiligo Clinic and Research Center, where Dr. John Harris oversees a specialty clinic for the diagnos and treatment of patients with vitiligo in addition to a vitiligo research laboratory. Touring Dr. Harris’ office and lab, patients had the chance to see first-hand where revolutionary research on vitiligo is taking place. In-between the lab counters, freezers and research instruments? A hammock – so the busy researchers can take naps during late nights in the lab.
Vitiligo Awareness Month became official in Worcester
Joining the conference on Saturday, the Honorable Joseph M. Petty, Mayor of the City of Worcester, proclaimed June as Vitiligo awareness month and June 25 as World Vitiligo Day in the City of Worcester. Cue another standing ovation.
A Washington, D.C. support leader gave a legislative update on the National Vitiligo Day resolution
Last year, a resolution was proposed for the naming of a National Vitiligo Day by Congressman Hank Johnson, the U.S. Representative for Georgia’s 4th Congressional District. Wallace Henry, who organizes the VITFriends support group in Washington, D.C., gave an update on the resolution and expressed the need to continue working to strengthen the resolution to raise awareness for the need for research and education funding.
Conference organizers were presented with an American flag flown over the U.S. Capitol
The conference was hosted in partnership by the UMass Vitiligo Clinic and Research Center, led by Dr. John Harris, and VITFriends, a nationwide support group for vitiligo patients founded by CEO & President Valarie Molyneaux. As such, it was only fitting that their leadership and efforts be recognized in a powerful way. On Saturday night, the two were each presented with an American flag that had been flown over the U.S. Capitol in Washington, D.C. on June 1 in recognition of the 2018 World Vitiligo Day Conference and their leadership.
A psychotherapist discussed ways to help children with vitiligo
With the 2018 theme dedicated to children with vitiligo, it was only fitting that Dr. Lisa Schuster, a child psychologist and assistant professor of psychiatry at UT Southwestern who has vitiligo herself, talked about how parents can help children with vitiligo. Following your child’s lead, allowing time for both yourself and your child to grieve, and educating others and staying involved were among the recommendations she gave the crowd of parents and families. Dr. Schuster also shared a 3-2-1 GO! plan for developing social skills in uncomfortable situations. The exercise involves thinking of three things to say when someone stares at you, two things to say if someone asks you what happened, and one thing to think of someone turns away from you.
Leading dermatologists sang karaoke during a dance party
Vitiligo patients have the coolest doctors – it’s just that simple. During the celebration Saturday night, leading dermatologists sang karaoke to roaring cheers from the crowd and continued to dance the night away with patients and families. Have you ever danced with your doctor before? Probably not. This simple moment demonstrates how much these doctors care. They aren’t just filling 9-5 office hours – they’re here to build relationships and be a part of our experience.
The 2019 World Vitiligo Day celebration was announced
Last but not least, the conference ended with the announcement of the 2019 World Vitiligo Day conference location – in Houston, Texas. The city is the home of the Houston Vitiligo Awareness Movement, a support organization for vitiligo started by Diane Wilkes-Tribitt, who has lived with vitiligo for 47 years. Stay tuned for dates and further information.
Looking for more information? You can catch the livestream of the conference at https://www.umassmed.edu/vitiligo/world-vitiligo-day-2018/.
Did we forget one? Share your favorite moment from the conference in the comments below.
Erika Page is a blogger, speaker and self-love advocate with universal vitiligo. After living with vitiligo for two decades, Erika founded Living Dappled to create a community of inspiration and hope for girls and women living with vitiligo.