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Last month, MyHealthTeams partnered with the Global Vitiligo Foundation to host World Vitiligo Day, a virtual event for the vitiligo community. The online streaming event included an address by motivational speaker James McLeod (@thatvitiligo_guy), interviews with members of MyVitiligoTeam, and a Q&A with a panel of dermatologists who specialize in treating vitiligo. Hundreds of people from 28 countries joined the event’s live stream.
As part of the World Vitiligo Day event, MyHealthTeams surveyed attendees about life with vitiligo. More than 50 participants responded to questions about their thoughts on a cure for vitiligo, whether they show off or hide their vitiligo, and whether their health insurance covers vitiligo treatments.
More than 70 World Vitiligo Day participants responded to the question: Do you want a cure for vitiligo? Of those who responded, 75 percent said they wanted a cure, while 25 percent indicated they were not interested in having a cure for vitiligo.
Participants were asked about their age when they found out they had vitiligo, and nearly 50 people responded. Thirty percent said they discovered they had vitiligo before age 13. Fewer people realized they had vitiligo as teens or young adults, with 22 percent finding out between ages 14 and 25. The majority — 48 percent — were diagnosed with vitiligo after age 26.
About 45 people responded to a question on whether they hide or show the parts of their skin affected by vitiligo. Their answers were very divided. While 15 percent said they hide their vitiligo and 44 percent said they show it, 41 percent responded “both.”
When asked whether their health insurance covers vitiligo treatments, almost 50 people responded. Nearly half — 46 percent — said some of their vitiligo treatments were covered by insurance, while only 13 percent stated that all of their treatments were covered. Forty-one percent said that none of their vitiligo treatments were covered by their health insurance.
Watch a Q&A video with Dr. John Harris on new treatments being studied for vitiligo.
Almost 60 people responded to a question about the use of sunscreen to protect their skin. The majority, 55 percent, said they use sunscreen sometimes. Only 12 percent reported that they never use sunscreen, while 33 percent said they always apply sunblock.
Read more about sunscreen and vitiligo.
Did you attend the world Vitiligo Day virtual event? If so, what did you like best about it? Would you be interested in participating in other virtual events for the vitiligo community in the future? Comment below or post on MyVitiligoTeam.