It took me nearly 20 years to tell my story about life with vitiligo. Talking about your life with this disease is hard – it puts a spotlight on something that is so personal, emotional and raw. Yet even though it’s difficult to talk about, we need to share their stories. And here’s why.
According to 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 – including your story.
“People look at vitiligo and think it’s ‘not a big deal’ because it’s ‘just cosmetic,’” explained John, a member of the Vitiligo Working Group. “But I know firsthand the pain that my patients go through and it’s not just cosmetic – it’s real. These stories need to get out so that we can build the case for funding and research for vitiligo.”
You heard the doctor – there aren’t enough people talking about their lives with vitiligo today to demand substantial action towards finding a cure. But we can change that – you can change that.
Considering that 1% of the population has vitiligo – nearly 70 million people – the vitiligo community has a big story to tell. And it’s a story that can start with you. The best part is that once you tell your story, you realize how simple it really is – and how healing it can be. Try the following ways to share your story and find out for yourself.
Share your story with Living Dappled
Living Dappled is a vitiligo and lifestyle blog that relies on the voices of its readers to tell its story – and that means you. We need people with vitiligo who are willing to share their stories – short and long, sad and sweet. Share your story by dropping an email to email@example.com.
Be part of the Spotting Beauty project
Spotting Beauty is a project that is creating a black and white coffee table book featuring those with vitiligo from all walks of life as a way of celebrating the condition. The project needs clear, high resolution and unaltered images of people with vitiligo in front of nondescript backgrounds. Find out more at http://www.spottingbeauty.com/ and submit your own photo to firstname.lastname@example.org.
Use trending vitiligo hashtags on Instagram
Using vitiligo hashtags in your Instagram posts not only lets you own your spots, but it builds awareness as other people without vitiligo see your pictures. It also helps other girls and vitiligo organizations find you on social media. Instagram is filled with hashtags around vitiligo, which you’ll see when you search “vitiligo” as a hashtag. The three most-used hashtags are #vitiligo, #vitiligoworld and #vitiligonation. But we’ve got a few more for you: #livingdappled, #stepup4vitiligo and #inourskinwewin.
Tag Instagram accounts that repost pictures of vitiligo
Instagram has multiple accounts with the sole mission of reposting pictures of people with vitiligo. The accounts are a great way to spread awareness and celebrate the diversity of people within the vitiligo community. Share your picture by tagging the following accounts: @vitiligobeauties, @girlswithvitiligo and @vitiligo.beauty. You can also direct message @nocuredontcare.
Share the Step Up for Vitiligo campaign video on Facebook with your own story
This past March, the Vitiligo Working Group launched the “Step Up For Vitiligo” campaign, a movement created to build vitiligo awareness and support. At the center of the campaign is a powerful and moving video, “Vitiligo: Hope, Truth & Change,” that explains vitiligo – what it is, why it’s hard to live with and how to treat it – through touching personal stories from patients, doctors and families. The video ends with people saying that this is “my story.” So share the video on Facebook and tell your own story in the caption.
Smile at people who stare and help them understand vitiligo.
Last but certainly not least – talk to the people around you, especially those who don’t know what vitiligo is. It takes courage and confidence, but smiling at people who stare at you is an invitation to talk. And each person you tell about your skin is one more person who knows about the condition. You’ll be increasing awareness and understanding for the vitiligo community one person at a time.
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.