5 Things I Learned about Living with Vitiligo at World Vitiligo Day
Last week, I packed my bags and made the trip from Brooklyn to Washington, D.C. for an experience that would change my life as a girl with vitiligo. I’ve had the condition since I was seven years old and after more than a decade, I decided to be an active part of the vitiligo community by joining the 2016 World Vitiligo Day celebration and rally on June 25.
The weekend opened my eyes to the community that I had never known that I was a part of, but that welcomed me warmly. I had the chance to connect with other people with vitiligo over dinner. I got to be involved in a fashion show hosted by Vitiligo Bond featuring sun-protective clothing. And I got to stand on the lawn of the U.S. Capitol and hear from vitiligo speakers including well-known vitiligo advocates like April Star, as well as dermatologists.
It was a powerful, emotional and downright beautiful weekend. Here’s what I learned and what I hope other with vitiligo can come to know, too.
You are not alone.
It’s easy for me to feel like living with vitiligo is a silent, personal battle. In fact, I lived with vitiligo for 18 years before deciding to reach out to others with vitiligo and seek support. But guess what? There are people with vitiligo out there who apply just as much sunscreen as I do. There are people with vitiligo out there who struggle just like I do. And there are people with vitiligo out there who feel just as alone as I do. Seeing the number of vitiligo support groups and communities at the rally opened my eyes to the community that I never knew I belonged to but has always been waiting for me. Living with vitiligo is hard, and everyone who has it knows your pain and wants to be there for you.
Vitiligo touches so many different people
Vitiligo does not discriminate. It affects people of all races, genders and cultural backgrounds. The 2016 rally saw more than 300 people from around the world with countries like Kazakhstan, Italy, Kenya, Cuba, Brazil, Canada and the United States represented. It also touches people of all ages – 25-35% of people with vitiligo are actually children. And you don’t have to be related to someone with vitiligo to get it – people without vitiligo can develop the condition spontaneously if they have an underlying predisposition to it.
Vitiligo doesn’t increase your risk for skin cancer
Myth busted! Despite the fact that you’ve likely been told by a dermatologist that you are at a higher risk for skin cancer due to your vitiligo, it’s simply not true. I watched this past weekend as Dr. John Harris, director of the Vitiligo Clinic and Research Center at the University of Massachusetts, stood on the U.S. Capitol steps and shared his research with us. It turns out that we actually have less of a chance of developing skin cancer due to our vitiligo and dermatologists who study our skin call the spots “white armor” because they protect us from skin cancer.
Every girl with vitiligo a story to tell
Each and every person with vitiligo has a story to share about their journey with vitiligo, and each one is just as powerful as the last. During my weekend in Washington, D.C., I met many special people and shared many meaningful conversations. A girl named Alicia especially stood out to me. She shared her story about how far she has come with embracing her condition. She started her own support group to put herself out there and help raise awareness. Alicia’s story inspired me and many other with vitiligo. And that’s why we need to tell our stories – to help others around us who are struggling to find peace with their skin.
The more we try to hide our vitiligo, the less the world understands it.
This makes sense, right? No one likes to be stared at, but people stare at our skin condition because they don’t know what it is. Raising awareness of vitiligo only helps the world understand and know our condition. So every time a person stares at your spots, realize that you are raising awareness for the entire vitiligo community. But don’t stop there. The more people who know about vitiligo, the more support, research and funding will be given to searching for a cure for the condition. And that’s why it’s so important to be involved in the vitiligo community.
So how about it? Save the date for June 25, 2017 to celebrate the World Vitiligo Day with a rally in Detroit, Michigan.
Tiffany Posteraro Grant is a New York based entrepreneur and owner of Perfect Penguin Consulting, a digital dating consultation company. In her free time, she enjoys fitness, reading and time spent with her husband and two corgis.
I have vitiligo ..I am unique ;strong and a great woman
My girl is soon to be 9 years old and her vitiligo started to apear when she was 2 and now shes looking for other kids her age with vitiligo, but I dont want to be a paying member and we dont have the fonds to go to america to world vitiligo day so what els can I do?
This article was very meaningful to me. My Daughter has Vitiligo and it can be very tough on her. We continue to tell her how beautiful she is. Thank you for the uplifting article.
I have vitiligo. It’s spreading more and more. I’m embarrassed to wear shorts or even let my husband see me without clothes. When and where are the rally’s and meeting?
Teri, apparently I’m just learning how comments work on Living Dappled – my apologies for the delay in responding! The 2017 rally will be in Detroit around the weekend of June 25. More details will be coming out on Living Dappled this October. Hope you can join!
Well done! Sharing on Twitter. See you in Detroit!
Hi Tiffany! Great article. I’m 41 today and I’ve had vitiligo for about 15 years. I didn’t really know it though because I had only one spot under my right arm that laid dormant for years. Until about 5 years ago I started getting more spots and now it’s all over my body. It does bother me BUT what really bothers me most is that there’s most likely something wrong inside my body that’s causing this. Some sort of imbalance or something. What are your thought about that?
I am new to Living Dappled…thank you Erika for creating it. Great article Tiffany…I read your story a few months ago on another website regarding your vitiligo tattoo..very inspiring. In response to Dina..I have had vitiligo for about 4.5 years now, it developed around the age of 35 and I feel the same about something being wrong internally. I have no family history of vitiligo or any other autoimmune diseases to my knowledge. I have been working with a functional medicine doctor for the past 2 years trying to get to the root cause. I can’t say I have had much success..my vitiligo continues to very slowly spread. While I am very bothered by the appearance of my vitiligo I am also very concerned about why my body is attacking itself.
Please help me find out more information about Vitiligo support groups in Atlanta
Robert, the Global Vitiligo Foundation has a list of support groups: https://www.globalvitiligofoundation.org/support-groups.