When I was first diagnosed with vitiligo, it was long before Winnie Harlow graced the cover of magazines and CoverGirl named its first model with vitiligo. I often felt like I was the only person in the world with this disease. In order to cope, I turned to the internet to find others who could understand my experience and the unique struggles associated with vitiligo. I found a few news interviews and YouTube videos of people who were living – and thriving – with vitiligo. These stories, although few and far between at the time, gave me much needed inspiration and hope. Most importantly, they helped me feel less alone.
Being part of the 1% of those living with vitiligo can feel isolating – but it doesn’t have to be. Today there are numerous platforms, communities and events for those with vitiligo to connect, learn and find support. If you’re interested in connecting with the vitiligo community, here’s where you can start:
Facebook groups are a free and easy way to connect with people all over the world who have vitiligo. As a member of many Facebook groups, I’ve noticed that people tend to share incredibly personal and deep stories about life with vitiligo in these channels. From sharing vitiligo anniversaries to tracking patch progression, it seems as if no emotion or topic is off-limits. Although you don’t have to actively participate in these conversations, these (most-often private) groups provide a safe space to share ideas, thoughts and opinions. A few well-known and active Facebook groups are VITFriends Vitiligo Support Group, Vitiligo Pride, and Vitiligo Experience & Support. However, there are a ton of support groups that specific to geographic locations.
The visual nature of Instagram allows vitiligo to be highlighted in unique and artistic ways. People with vitiligo head to Instagram to share empowering photos of their skin and connect with others via comments and messaging. For inspirational content, you might follow model April Star or check out photographer Elizabeth Van Aalderen’s recent vitiligo series. For education and community, you can check out the Vitiligo Research Foundation and Living Dappled. You can also submit your photo to accounts like Vitiligo Beauty and Pigment Painter. A full list of popular and community-based Instagram accounts for vitiligo is available here.
Membership networks are typically communities that require a fee but provide exclusive access to a host of benefits and perks. Living Dappled’s membership network, the Dappled Darlings Community, provides members with a private Facebook group, exclusive monthly virtual discussions, bi-annual expert-led workshops and a members-only newsletter with additional content and perks. Learn more about the membership network.
Pen Pal Programs
Vitiligo Pen Pal Patch is a pen pal community for children living with vitiligo. This innovative outreach program allows kids to “mail a letter, send a picture, or facetime” another child in the U.S. living with the condition. The group also has a Facebook community for parents and children in the program. If you know of a child or family who may be interested in participating, contact firstname.lastname@example.org.
Vitiligo discussion forums and blogs provide a source of education and community. Platforms like Living Dappled and Unite for Vitiligo candidly discuss everyday issues, lifestyle trends and coping strategies for those living with the condition. These sites thrive off community engagement and give users a chance to not only learn, but actively participate in meaningful conversations. Readers are encouraged to not only consume the information but share their own stories and experiences too.
Support Groups and Events
Although a virtual connection to the vitiligo community is impactful, there is a special kind of solidarity that is created through in-person support groups and events. Support networks like VitFriends, Litty Ligo and the Vitiligo Society regularly host support group meetings, social gatherings and fundraising events. Hundreds of people also meet in person each year at the World Vitiligo Day conference to connect with medical experts, advocates and the vitiligo community.
How do you connect with the vitiligo community?
Simone Girma is an LA-based communications graduate working for NBC. She’s lived with vitiligo for ten years and has learned how to appreciate the story of her skin – something she aims to share with readers.