I am sitting in a coffee shop in the Detroit Metro Airport on World Vitiligo Day, June 25th, 2017, drinking a caramel latte while I wait for my flight back to Boston, which will be followed by about an hour drive home. I’m exhausted, but it’s a “good kind of exhausted”, a phrase I’ve heard from others who attended the World Vitiligo Day meeting in Detroit, MI. Another phrase I heard there was “I’m on an incredible high that will last for the next few weeks, at least”. I understand exactly what they mean, and I’m writing this post now so that I can accurately record the incredible events that unfolded this weekend.
First, attendees from all over the world were hosted by the incredible V-Strong support group, founded by Lee Thomas, a news anchor for Fox TV Detroit, and Dr. Henry Lim, chair of dermatology at the Henry Ford Hospital in Detroit. Kim Jackson Boyd (V-Strong member and vitiligo patient) and Dr. Richard Huggins (vitiligo expert at Henry Ford Hospital) took charge of the meeting, and pulled off this big event with poise and grace. This was the 2nd annual national World Vitiligo Day gathering, which had 140 attendees, and full of energy! Just as a reminder, our own Wonder Woman and founder of VITFriends Boston and satellite groups Valarie Molyneux started the national gathering last year in Washington DC, WVD2016. This year, Jorge from Cuba was probably the vitiligo patient who traveled the farthest, while Dr. Khaled Ezzedine and Dr. Viktoria Eleftheriadou, dermatologist experts in vitiligo, traveled from Paris and London, respectively. Of those from the US, many support groups from many states were represented. I flew in to Detroit from Washington DC, where I had attended a grant review committee at the National Institutes of Health (NIH) just before the meeting started (this is another reason why I’m tired, I think).
The meeting kicked off with a meet and greet on Friday evening as attendees arrived at the conference hotel. This was low-key but fun, as we made new friends and received gift bags that, among other things, contained a can of Vernors ginger ale, the oldest brand of ginger ale in the world (it was created by James Vernor, a Detroit pharmacist, in 1866). As many there were tired from the long trip in, most retired to their rooms to rest for the busy days ahead. I took the opportunity to get dinner with Dr. Amit Pandya from Dallas and Dr. Viktoria Eleftheriadou from Nottingham, England, where we had a chance to catch up and talk about all the exciting things that are happening in vitiligo research. Dr. Pandya and I roomed together, and so we stayed up too late talking after dinner (another reason why I’m tired).
The following morning was a blur for me. The meeting began (mercifully) at 9am with a wonderful talk by Jasmine (Jazz) Colgan, vitiligo sufferer, artist, and founder of Tough Skin, a project started to raise awareness for vitiligo and catalogue the struggles of those affected by it. She has traveled the country interviewing people with vitiligo, helping to share their stories to the world. Next, my blogger colleague and vitiligo patient herself, Erika Page from Living Dappled, spoke to us about the importance of speaking up about vitiligo, patients sharing their journeys, and using their talents to further the cause of vitiligo. This includes raising awareness of the condition to promote research funding, insurance coverage, and social acceptance of their white spots. The audience was provided with a postcard to send to their government representatives to let them know that vitiligo is important, and worth their attention. She was paired up with Mr. Lee Thomas, world-famous anchor from Fox TV Detroit, who not only routinely interviews the rich and famous but also has vitiligo and wrote the book Turning White. He was also quite inspiring (after all, this paired his vocational talents with his passion for vitiligo advocacy), reflecting on a conversation he had before interviewing actor Will Smith about his incredible optimism and positivity.
Lee Thomas, Dr. Iltefat Hamzavi, Lori Glenn-Harris (no relation to me!), and I were late to the morning session, because we were on TV! Lee, without his usual makeup, took us on screen for the morning Fox News program to talk about World Vitiligo Day. It was a short, 5-minute segment (watch it here: http://www.fox2detroit.com/news/us-and-world-news/263605960-story) in which Lee talked about the celebration in Detroit, the role of V-Strong in pulling it together, as well as the importance of bringing vitiligo patients, their friends, family, supporters, and vitiligo experts together. I had a chance to talk about our research goals toward better treatments and, ultimately, a cure, to which Lee gave me an emphatic “AMEN”! After the segment, we got a tour of the set from Lee, which was a lot of fun. But after that we quickly made our way back to the meeting to join the others.
After lunch, we hosted a session where the vitiligo experts answered questions from attendees about vitiligo. The experts included me (from UMass in Worcester, MA), Dr. Hamzavi (from Henry Ford Hospital in Detroit, MI), Dr. Amit Pandya (from UT Southwestern, Dallas, TX), Dr. Pearl Grimes (from the Vitiligo and Pigment Institute of Southern California), Dr. Nada Elbuluk (from NYU, New York, NY), and Dr. Richard Huggins (Henry Ford). We took a unique approach to this question and answer session, in which each doctor sat with 8-10 patients in small groups and answered any and all questions for about an hour and a half. My group had a great time together, talking about vitiligo for the entire time – there was never a pause in the conversation, as one question and explanation led right into another. We talked about treatments, causes of vitiligo, diet and supplements, chemicals, and other things.
After this, we held a workshop to get answers to some very important research questions about what vitiligo patients expect from their treatments, including how much improvement is acceptable, how fast this improvement needs to happen, and how to measure this improvement. These were questions that the vitiligo experts can’t answer for the patients, and without this input we could not proceed with FDA approval for medications or effective clinical trials. In fact, while the research project to design better measurements for the outcomes of clinical drug trials had progressed over the previous 7 years, this was a lack of data that dogged the researchers for a long time. We thought that WVD2017 would be an excellent opportunity to fix this, and allow the research into new treatments to move forward. Dr. Viktoria Eleftheriadou from Nottingham, England and Dr. Khaled Ezzedine from Paris, France are the lead investigators on this research, and organized this session. Each doctor led the discussion for a small group of patients, asking for their input about treatments and expectations for improvement from these treatments. In about 2 hours, we had all the data that we needed, and all the groups agreed with each other! History was made in this session, and we realized that we should have done this much sooner. . .
Many of us enjoyed the books that were offered for sale at the meeting, written by vitiligo patients themselves. These 3 books included Turning White by Lee Thomas, Vitiligo Doesn’t Scare Me by Kim Kirkland, and Skin Deep – A Child’s Story by Phyllis A. Russell Gilmer. They are all great books for people with vitiligo and those who care about them. The first is primarily for adults, while the last two are geared toward children. I was able to talk to the authors, and bought my signed copies for the waiting room in my Vitiligo Clinic. We also announced the formation of the new Global Vitiligo Foundation (GVF), a physician-led organization focused on improving the lives of people living with vitiligo. They sponsored this event, and are leading efforts in improving awareness for vitiligo, optimizing clinical care for patients, and supporting research into better treatments and a cure.
That night we had dinner and dancing, which was possibly the highlight of the whole weekend. It turns out that those with vitiligo and doctors who are vitiligo experts love to dance! We spent hours on the dance floor doing the Wobble, Bikers Shuffle, and other dances. I tried to learn the Bikers Shuffle at least – I watched Josh Hampton from Maryland, who clearly knew the dance well, but I think he through in a bunch of complicated extra stuff that made it very confusing for me. Dr. Pandya got the most compliments, probably because most people were surprised that a doctor could dance, and he is very talented! I half expect him to retire from vitiligo research and start teaching Salsa and Bachata, but fortunately he’s remained focused so far. We had such a great time together, and probably won’t forget it, where it didn’t matter what you did for work, what your skin looked like, or even how old you were (Alicia Roufs’ son was right out there on the dance floor with us).
So there was a LOT of stuff that we did together, and this is what WVD is all about. A little inspiration, a little socialization, a little learning, a little giving back, and a WHOLE LOT OF FUN! That’s what the high is all about. We already can’t wait for next year because we miss our friends! We moved mountains this weekend, and they’ll continue to move as we all do our thing over the next 365 days. We have some VERY special things planned for next year, WVD2018 – stay tuned for the details, you won’t be disappointed!
