You Are NOT Alone!
written by Valarie Molyneaux President & CEO, VITFriends My name is Valarie Molyneaux, a recently retired Kindergarten Teacher of 20 years; a women's prayer group leader of 10 years; Community Activist of 30 years; well, you get the drift.
I am known for wearing many hats, but the ones I am most proud of are: wife (just celebrated our 31st anniversary) and mother of two sons - both Boston Public teachers and Vitiligo advocates.
But there's more to me than the teacher, prayer group leader, activist, wife and mom. Early one morning - I believe it was a Thursday - in 2002, I was sitting in my kindergarten classroom meditating and waiting for the children to arrive. I noticed a white spot on my left thumb. As with anyone, my natural reaction to seeing something on one's skin, I rubbed it but it would not go away. I didn't think much of it, until a day or two later when I woke up and noticed there on my right thumb was a similar white spot. Panic struck in! I remember thinking: what did I eat? What did I do? Is this cancer? Am I going to die? And so much more.
I chose not to say anything to my family here or those in the U. S. Virgin Islands. I told another teacher at school and she somehow immediately knew to direct me to another classroom where she said I would find a beautiful blonde little kindergarten girl with something similar on her fingers. I immediately walked to the room and saw the child sitting alone, as they would do before the start of the school day and when I walked over to her, her eyes locked on me and when I sat beside her I asked ”what is that on your hands?” She said a word that I had never heard before. ”It’s Vitiligo." And she added, "and no one wants to play with me.” I comforted this young girl and told her, "From today, I am your friend." And that was my introduction to Vitiligo - from a kindergartner.
Within days I made an appointment with my doctor who confirmed the word uttered from my new "friend" Vitiligo. This child's word was now added to my vocabulary. I was devastated with the news and was referred to a dermatologist. Like the kindergartner and my primary care, the dermatologist concurred and offered me a topical treatment, a referral for light treatment at Beth Israel Hospital followed by the dreaded two words “no cure.” My activism somehow kicked in and inquired about any support group for people like me and my little friend, but he knew of none. Introduce my depression, isolation, embarrassment, anxiety, and fear. As debilitating, devastating and many more adjectives I could add here, even though the thought of suicide entered into my mind, I knew I wanted to live! I needed to live.
I formed a support group, VITFriends and today I am proud to be leading 15 VITFriends Affiliates across the United States, with several more in the works, including our international affiliate, VITAmigos, Cuba.
When there was nowhere for me to turn, I found a place to turn. When there was no one to talk to, I found a space for 'us' to talk. When there were no answers, I found a place to find answers together. VITFriends is more than a place where people living with Vitiligo can go to not feel alone. It's a clarion call for awareness, advocacy, and understanding. It is a space to find the answers to the questions we all have. It's a space to know that we are not alone in our unique world. It's a space for you to be mad, or know that for just a moment, everything will be okay. I founded VITFriends so I would never have to hear the words of a little girl (or boy) say again, no one wants to play with me. And even though VITFriends doesn't have the government or corporate support needed to reach so many more people, we know that even if it's just one more person a day, we are being true to our mission: a patient advocacy group that encourages, educates and empowers our Vitiligo Friends to know all there is to know about their disease; to advocate for themselves; to be comfortable in their own skin; and to LIVE their best life NOW!
It's about making a difference! To learn how you can help, please visit us at vitfriends.org. Because at VITFriends, you are NEVER alone!