Why We Need the Voice of Vitiligo – And Why it Starts with You
The voice of vitiligo – the collective voices of our doctors, lobbyists, patients and supporters – is making waves in the world today.
Our voices have been featured on Fox 2 News, have shared more than 100,000 stories on Instagram using the hashtag “#vitiligo,” and have been highlighted in media outlets like Allure, Elle and People. We’ve educated more than 300,000 viewers through the “Step Up for Vitiligo: Truth, Hope and Change” video. And that’s just a few examples.
Together, our voices are educating, supporting and inspiring people around the globe. We’re educating the public about this condition, inspiring our community to have confidence and supporting those who need help. Needless to say, our voices are reaching people. But we aren’t done yet – and that’s why we need you.
Why We Still Need the Voice of Vitiligo
Our work is far from done. We still need the voice of vitiligo today, and we need it desperately. It’s easy to talk about the girl who loves her skin, the doctor who found a new treatment and the events that are raising money for research. But that’s not the full story of the vitiligo community.
The unfortunate reality is that for every person who has accepted their skin, there are a dozen who are still struggling with depression and social alienation. There are people who are scared to leave their homes without makeup and who cry themselves to sleep each night. There are children who are being bullied in schools and onlien, called names like cow and zebra. There are lawmakers and donors who don’t understand the need for funding for vitiligo research, who think that vitiligo is just a cosmetic issue and not something that needs a cure. There are dermatologists and researchers who want to find a cure but don’t have the funding to make it happen.
The need for change in our community overwhelming. But here’s the best part: we have the power to change all of that, with just our voices.
You Have the Power to Create Change for Vitiligo
According to Dr. John Harris, Director of the University of Massachusetts Vitiligo Clinic and Research Center, everything that needs to be done for vitiligo patients, including funding, research and lobbying, comes back to raising awareness by telling the stories of people with vitiligo. That means that you – yes, you – have the power to change the future of the vitiligo community using your voice and telling your story.
You can be the voice of vitiligo that lets those who are struggling know they aren’t alone. You can be the voice of vitiligo that helps the public meet our community with understanding and education instead of judgement and hate. You can be the voice that persuades our U.S. Congress to set aside funding for vitiligo research and awareness. You can be the voice that helps drawn in the resources that will let our doctors and researchers set out to find a cure.
All you have to do is use your voice to tell your story.
How to Be the Voice of Vitiligo
There are countless ways to be the voice of vitiligo and tell your story in the world today, but it comes down to this: take whatever you do best and do it for the vitiligo community. It’s that simple.
Are you an Instagram guru? Start posting with #vitiligo and sharing your story. Are you a photographer? Offer your services to vitiligo organizations and help them tell their stories. Are you good at hosting events? Tell your story by organizing a fundraiser and donating the funds towards vitiligo research. Do you have persuasive skills? Meet with your state official and talk about the need for vitiligo funding.
Here are a couple of ideas to get you started:
Write postcards to your state officials.
Visit Capitol Hill and talk with your representatives.
Start a blog or write a guest post on another blog.
Pitch your story to the media.
Use #vitiligo and #StepUp4Vitiligo on social media.
Share the “Step up for Vitiligo: Truth, Hope and Change” video with your friends and family.
Start an Instagram account or Facebook page to share your story.
Join or start a support group in your community.
Host a fundraising event for vitiligo.
Explain vitiligo to people who ask you about it.
Host a walk or relay to raise money for research.
Wear a vitiligo t-shirt.
Get on Facebook live and teach your friends and family about vitiligo.
Write a book about vitiligo.
Talk to school administrators about vitiligo and bullying.
Offer photography and videography to vitiligo organizations.
Smile at people who stare at your vitiligo.
It all comes down to this: the voice of vitiligo starts with you. What will you do to be the voice of vitiligo today?
Erika Page is a writer and blogger with universal vitiligo. Her first spots appeared on her spine when she was seven years old and today vitiligo covers her entire body. Based just south of Washington, D.C., Erika founded Living Dappled to create a community of inspiration and hope for girls and women living with vitiligo.