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I was diagnosed the summer after my 50th birthday. I had limited knowledge of vitiligo. My few points of reference were Michael Jackson and Lee Thomas of Fox 2 News Detroit. Five years prior to my diagnosis, Lee had done a special on the news where he told his vitiligo story and removed his makeup. I had no idea vitiligo would find me and connect us.
I have segmented vitiligo. My spots are only the left side of my face, my scalp, and the middle of my chest. My initial diagnosis brought a lot of uncertainty. I visited the multicultural dermatology department at Henry Ford Hospital in Detroit. Upon diagnosis and after being prescribed a cream and a steroid, I was told about the support group started by Lee Thomas: V-Strong Vitiligo Support Community. I was apprehensive about going, and it took me several months to attend my first meeting.
My spot spread very fast! I got the stares and the points and the “oohs” and “ahhhs.” I tried covering it with makeup. I stared in the mirror. I watched more color disappear. I had no idea why this was happening.
I was the only person (so I thought) in my family with vitiligo. It turns out my great aunt also had vitiligo; however, mine was not hereditary. My vitiligo, we think, was brought on by stress. As I think back, I probably internalized the death of my mother and, years later, the death of my younger sister at 38 years old. This left five children (four of them minors) for us to care for. Plus, I worked as a manager in a busy financial institution's customer contact center.
I finally attended my first vitiligo support meeting. I was welcomed by everyone, and I gained confidence and a way to communicate about my vitiligo when I faced stares while out and about. I created some awareness cards which explained vitiligo on one side and provided the support group's information on the other. I suddenly found my voice. When a 5-year-old followed me around Target — pointing and saying, "Mommy, look at her face!" several times — I spoke with the parents, presented my awareness card, and explained my vitiligo. A support group is a wonderful place to find encouragement, strength, and confidence.
I immersed myself in working in our vitiligo community. I found myself very involved in our support group and in helping spread awareness in the metro Detroit area. Through this work, I've been involved in many initiatives to help make vitiligo a household word. I initiated and became a member of our V-Strong Leadership team. I taught myself how to build a website and built V-Strong's site. I was part of Global Vitiligo Foundation's Step Up for Vitiligo campaign and connected with the American Autoimmune Related Diseases Association (AARDA) here in Detroit for their annual walk — where vitiligo was proudly represented for the first time. I partnered with Ulta Beauty in metro Detroit for a day of makeup fun, and traveled to Washington, D.C., for the first World Vitiligo Day (WVD) conference on the steps of the Capitol. I also traveled to Washington, D.C., twice to lobby for funds from our local elected officials.
In 2017, our support group hosted (and I was the chairperson for) the WVD conference in Detroit, where almost 200 people gathered. I was honored as Woman of the Year by the Women's Informal Network for my work in the vitiligo community in 2018. I also manage our support group's social media page and, lastly, I am a member of the board of directors of the Global Vitiligo Foundation.
I can't believe that losing my pigmentation brought these opportunities to my life. I built websites, became a leader, and worked with some of the world's finest dermatologists (who are working hard to find better treatments and a cure for those with vitiligo who desire treatment and a cure).
My purpose — to help others — in many ways was defined by this experience. It's always been there, but having vitiligo certainly magnified it. I have gone on interviews or spoken to children about my vitiligo, and every time I talk about it, the more I increase awareness and knowledge. My path has crossed with people I would not have otherwise met.
I'm an optimistic person and that helps with living with this skin condition. Vitiligo, like anything people deal with, can make or break us. I've had my moments and I still do — those moments of doubt or “Why me?” — but I choose not to remain in that. I know that I was given this because I can handle this.
I've learned to see things and people differently. I know that most people are dealing with things others cannot see, but with vitiligo, we can't necessarily hide. The stares irk me and, yes, I'd rather people ask — but they don't (and that's OK). I just go on with my day.
My mother used to always say, "It matters not what happens to you. What matters is how you react.” I react as positively as I can, and I try to teach if the person is willing to learn.
My goal is to continue with this work and help others realize that "healing begins beneath the skin." (That’s our support group motto.) This means that, as physical as this skin condition is, it can also be mentally draining. But if we begin to learn how to accept and "rock” our skin, we can embrace, teach, heal, and be a beacon of light to others on this vitiligo journey.
This article was written by MyVitiligoTeam member Kim Boyd as part of the Member Spotlight Series. Kim is a leader in the V-Strong Vitiligo Support Community in Detroit and is a member of the board of directors for the Global Vitiligo Foundation.
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