More than 150 patients, doctors and advocates gathered in Southfield, Michigan this past weekend for the 2017 U.S. celebration of World Vitiligo Day.
In a high-energy three-day event, attendees explored the face, voice and science of vitiligo by participating in conference sessions and workshops hosted by leading dermatologists and advocates. Programming featured patient stories, medical and research updates, and news about upcoming advocacy efforts. Patients also had the chance to participate in a research outcomes workshop that allowed doctors to set standards for future medical trials.
Here were some of the features of the 2017 program:
The Face of Vitiligo
Jasmine Colgan, founder of the Tough Skin movement, shared her personal journey with vitiligo and her interactions with the vitiligo community through her project. Tough Skin aims to inspire acceptance in those with vitiligo by showing their beauty through photography. Traveling around the country to meet with people, Jasmine photographs her subjects and returns the favor with a special bracelet.
The Voice of Vitiligo
Lee Thomas, Fox 2 News entertainment reporter and motivational speaker, and Erika Page, Founder of Living Dappled, talked about the importance and impact of the voice of vitiligo in the world today. Sharing his journey as a news anchor, Lee talked about the impact he’s been able to make just by going public with his journey with vitiligo. Taking a broader approach to the voice of vitiligo, Erika shared some of the successes of the vitiligo community in media and social reach and talked about the need for the voice of vitiligo in the effort to find a cure – and what each person can do to help.
The Science of Vitiligo
Leading dermatologists who specialize in vitiligo joined patients at World Vitiligo Day to share updates on the latest treatments and to answer patient questions in small groups. The doctors also hosted a groundbreaking research workshop in which patients were asked to weigh in on research outcome measurements for vitiligo treatment. As a result, dermatologists should now have the information they need from patients in order to create the measures that are necessary to start doing clinical trials. This has been a problem for seven years, and after just two hours with close to 50 vitiligo patients, the doctors were able to understand what patients expected from treatments that will be tested in future clinical trials – something that is critically important for the future approval of drugs by the FDA to treat vitiligo.
World Vitiligo Day – What’s Next?
Recognizing the vitiligo community, World Vitiligo Day was first celebrated in 2011 and has since become a global event with the purpose of raising awareness and recognition of the bullying, social neglect, psychological trauma and disability of the millions of people affected by vitiligo. The first formal U.S. celebration was held in Washington, D.C. in 2016.
If you missed this year’s event, keep an eye out for news about the 2018 U.S. World Vitiligo Day celebration, which be hosted in or near Boston, Massachusetts around June 25, 2018.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.