The vitiligo community needs girls with vitiligo to step up and share their story – and these four girls are doing just that.
Telling the world about your skin can be hard – often, you’re letting people see the most vulnerable side of you. But telling your story is important too. 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.
“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.”
Read the inspiring messages of four girls with vitiligo who had the courage to share their stories:
Vitiligo sufferer who was bullied for looking like a ‘burns victim’ reveals how Instagram finally gave her the confidence to flaunt her skin patches (Daily Mail)
Twenty-four-year-old Cat Spedding used makeup and tall socks to hide her spots – until she saw model Winnie Harlow and other girls with vitiligo on Instagram. Seeing others share pictures of their skin inspired her to find confidence in her own body.
“There are so many people on social media who share photos and support each other,” said Cat. “It made me realize that I shouldn’t have to change who I am to stop people shouting stuff at me. My vitiligo is part of me so I’m not going to hide it.
We recently interviewed model and nutritionist Breanne Rice on her feature in Discovery Channel’s documentary called “Too Ugly for Love?” Since the season aired in the United Kingdom, Breanne has been sharing her story to raise awareness for the vitiligo community.
“I used to think that being vulnerable was a sign of weakness,” said Breanne in another interview with A Plus. “But now I think being vulnerable is a sign of strength and boldness.”
Written anonymously, this compelling story shares the heart-breaking experience of a girl in India who lost the guy she loved because of a lack of acceptance. In the article, the author writes about how she was dating a guy who had accepted her and the spots she has on her fingertips and toes. But once she met his mother, the relationship was over.
“I was asked to remove my slipper and show her my spots,” writes the author. “I was told how it would spread across my whole body and how she wanted the best for her son… after that incident, he was no longer interested in living with me.”
Christiana Jones was 16 when she got vitiligo. Seeking a way to connect with other people in the vitiligo community and build a positive conversation around the condition, she started the interactive online community Spotlight Vitiligo.
“I wanted to create a space that’s really positive,” said Christiana about Spotlight Vitiligo. “…And more focused on body positivity and helping people come to terms with their body image.”
Do you want to share your story? Visit http://livingdappled2.wpengine.com/write-a-blog/share-your-story/ and tell us about your life with spots.
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.