Erika Page has been living with vitiligo since she was seven years old. Vitiligo is an autoimmune disease that causes a loss of pigment from areas of the skin (see here for more information). There is no cure for Vitiligo and treatments are expensive and limited. After twenty years of living with the condition, Erika decided to share her story on her blog, Living Dapped. Since then, Living Dappled has grown to be a collective voice of girls and women with vitiligo, featuring guest bloggers and multiple perspectives. The blog has been able to inspire other girls with vitiligo who need support and community. I was able to interview Erika about her amazing acts of kindness and what being kind means to her.
What are ways people can get involved in raising awareness of vitiligo?
The opportunities to raise awareness for vitiligo are endless. At the most basic level, raising awareness starts with just sharing your story – or the story of a person you know that has vitiligo. Post about it on social media, wear a vitiligo t-shirt, make a video, or even submit your story to sites like Living Dappled and let us share it for you. You can also host fundraisers, volunteer for a vitiligo organization or come to events like World Vitiligo Day.
What advice do you have for someone who maybe was just diagnosed with vitiligo or living with vitiligo?
I have three pieces of advice, actually. First, know that you are not alone. Living with vitiligo can be hard, but everything you will go through is something that others with vitiligo have also gone through. So to that point, the second piece of advice is to be gentle with yourself. Let yourself cry when you need to cry. Give yourself space and time to move through your emotions and don’t expect to just “be fine” because you think you should be. And finally, the last piece of advice would be to work towards owning your spots. Whether you’re letting people see your spots or hiding them under makeup, find the strength to own each day. It doesn’t mean you have to love your skin, but it means that you won’t let your skin hold you back from being you.
How does Living Dappled help someone who may be living with vitiligo?
Living Dappled was built to be a place to talk about everyday life with vitiligo. We strive to share stories that both inspire those who are struggling and also support those who just need to know that they aren’t alone. We also try to stay on top of news and what’s happening in the vitiligo community to help bring people together. So far, it’s working. We have readers who came to World Vitiligo Day 2017 because they read our blogs about the event. We have readers who wrote to say that they were inspired to do things like leaving the house in more than just gym pants. And we also have readers who say that our stories make them feel more normal and less alone.
Why is being kind important to you?
I believe that being kind is the key to starting conversations about vitiligo and raising awareness for this condition. When you have vitiligo, you get stared at all the time, and it’s easy to take it as a personal attack and react negatively. But most people are just curious and don’t mean to stare or make you uncomfortable. By responding to stares with kindness, you turn a potentially negative harmful situation for yourself into an educational and awareness-building moment for others. The more we do that, the more people will understand vitiligo.
What do you hope to see Living Dappled do for the vitiligo community in the future?
That’s a big question! There’s so much I hope to accomplish, but first and foremost, Living Dappled was built to be a voice of vitiligo both for our community and the world around us. The vitiligo community needs to rally together to fight for a cure – and communication between patients, nonprofits, research centers and support groups can help that effort. And the world needs education and information around vitiligo. By sharing the stories of those with vitiligo, I hope to teach the world to have compassion and understanding for those with this condition.
What do you hope people understand from reading about you and your story?
Being kind takes many forms and using your talents to help others is one of those forms. I love to write and produce content, and I’ve found a way to use that skill to help others that face the same struggles as me. When you can find a way to use what you love to help people who need your talent, you have the chance to make a significant impact – and that’s more powerful than you could ever imagine.
To read more about Erika’s story and Vitiligo check out the website: http://livingdappled.com/