Reflecting on the past year, I can’t help but think, “Look how far I’ve come!” Between my local television debut and speaking at World Vitiligo Day, I can easily say that 2016 was the greatest year of my life as a girl with vitiligo. Here are just a few reasons why.
I made it to World Vitiligo Day in Washington, D.C. for the first time
I didn’t think my husband would say yes. I had seen information about the World Vitiligo Day 2016 celebration a few times in my Facebook news feed. I contemplated about going and thought it would be cool. I also thought, “Well we can’t really afford it this year” – with the event in Washington, D.C. and living in Minnesota. I commented on a few people’s posts about the rally, wishing I could go. Then I sat one day at work and decided I was going to make it happen. I told my husband I really wanted to go and he answered, “let’s do it!”
I spoke up for vitiligo – literally, at the World Vitiligo Day rally
Before the rally, I made a short video about what vitiligo was and my journey with it. I shared it on Facebook and encouraged others to share it. And then it went crazy! I was called by local newspapers to do interviews. And then I was asked by Valarie Molyneaux, the head of VITFriends, to share my story at the capital rally in 2016. I was completely blown away and honored. A simple two minutes and 13 second video brought me one of the greatest moments of my life. I sat down to write by speech and it only took me ten minutes – ten minutes to put my life with vitiligo in a nutshell. I gave my speech on a very hot June 25th in front of the U.S. Capital, sharing my struggles and triumphs as a girl living with vitiligo. And in that moment, all my insecurities, fear, pain and anger because of vitiligo evaporated as I looked out at the crowd and saw people just like me wiping their tears away because they felt just like me. It was a beautiful moment and one I will never forget.
Watch Alicia’s speech at the 2016 World Vitiligo Day rally at https://youtu.be/KVUFMOZrnPY.
I helped my vitiligo support group become a part of VITFriends
This past July, the Minnesota support group that I started in June 2014 officially became part of the national non-profit support group VITFriends. After being truly inspired by the World Vitiligo Day rally in Washington D.C. this past year, an event that was organized by VITFriends, I knew that our 70-member support group in Minnesota should join them. Valarie and the rest of VITFriends accepted us with open arms. Since joining, we have been able to market our community more easily with access to marketing materials and non-profit support. I was also voted as the PR/Marketing director of VITFriends, and have been working hard to increase awareness of the non-profit’s mission on a national level.
Watch the Minnesota VITFriends’ annual picnic video at https://youtu.be/Y_WYi7u5HVU.
I shared my story as a girl with vitiligo on local television
After letters, emails and constant pestering, I was able to snag an appearance on our Fox affiliate in Minneapolis. I was asked to do a short interview on vitiligo and our support group here in Minnesota. I was able to educate people what vitiligo was, how it affects those who have it, and how there is support for those with it. We were able to share that video and gained even more members for our Minnesota support group because of it.
Watch Alicia’s interview with Fox 9 at https://youtu.be/tlbRF2pjUhw.
I found a support team in the vitiligo community
I truly feel like I met my family at the World Vitiligo Day celebration in Washington, D.C. this year – my vitiligo family. We were instantly connected and will stay that way for the rest of our lives. The hole that was inside me my entire life that left me feeling different, weird and freakish is now filled with love, and support and community. I am no longer broken, I am whole.
Watch the #IAMVITFRIENDS video on the Minnesota chapter’s YouTube: https://youtu.be/qa69Jv-gKgo.
Alicia Roufs is the chapter leader of VITFriends Minnesota and has been living with vitiligo since she was 3 months old. She lives in Minnesota with her husband Dominic, son Herbie, and their dog Ronnie.