Dear Scientist,

My name is Valarie Molyneaux, I wear several hats but the ones that I am most proud of are: wife of 31 years; mother of two sons, both Boston Public Schools teachers; and international vitiligo advocate.

In 2002, early one Thursday morning as I sat in my kindergarten classroom meditating and waiting for the children to arrive, I saw a white spot on my left thumb. I rubbed it but it would not go away. Within a day or two, I woke up, started preparing for work, and there on my right thumb was a similar white spot. I immediately panicked and began questioning: What did I eat, what did I do… and so much more…

I did not say anything to my family locally or those who lived in the US Virgin Islands. But I told a fellow teacher and she immediately knew to direct me to another classroom where she said I would find a little kindergarten girl with something similar on her fingers. I walked to the room and saw the child sitting alone, as they would do before the start of the class day. 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” and she said a word that I had never heard before…”It’s vitiligo, and NO one wants to play with me.” I said, from today, I am your friend, and that was my introduction to vitiligo, from a kindergartner.

Within days I made an appointment with my primary care and YES, the child’s word was now added to my vocabulary. I was devastated with this announcement and was referred to a dermatologist. Like the kindergartner and my primary care doctor, the dermatologist concurred that I had vitiligo and offered me topical treatment, and a referral for light treatment at Beth Israel Hospital, followed by the dreaded words: NO cure. I inquired about any support group but he knew of none and here began my depression.

Vitiligo is debilitating, devastating, and many more adjectives, but I wanted to live fully for my sons. So, in 2009 I formed a support group, and today, I am proud to be leading 15 VITFriends Affiliates across the US, with several more in the works, and VITAMIGOS in Cuba. 

I’m writing this letter along with Barbara, who is a dear friend, neighbor, and partner in this vitiligo work. Our experiences with vitiligo have affected our lives in many ways, but most importantly I’ve gained a sister and a lasting friendship which I treasure.

Dear Scientist, 

My name is Barbara Hamilton. I was diagnosed with vitiligo at 25, and I’m now 68. My Great Grandfather had vitiligo, I’m told, but pictures of him never showed it — he had a light complexion. He was from Bermuda and worked as a machinist. My mom had a small spot that never spread, she was a nurse.  I have one sister who has not shown signs of having vitiligo, though we share other medical issues. 

I’m retired now but had a busy career working in public service and keeping out of the public eye was NOT an option. So in attempts to correct the issue, over time, I went for treatments, taking pills, undergoing light treatments for years, opting for depigmentation — and did I mention, I identify as African American? My life was and still is filled with many activities that are focused on bringing people together; duties that are joyful and sometimes stressful. Through all of that, I have come to be about 85% depigmented. What’s left of my original melanin is on my lower legs. In some regards, finally losing my color or at least becoming one color has given me peace. The transition stages are the most difficult as you’re often at the mercy of others’ compassion. 

What gives me the greatest concern is will this disease be passed onto my granddaughters — how could it be prevented? My goal in doing this work and with VITfriends is to find a cure to prevent others from suffering in silence or in public as I have.

I first met Valarie in 2009 at a neighborhood meeting where my mom served as coordinator. She told me about the first VITFriends vitiligo support group meeting to be held in Boston and was happy that I attended because I met others from various states. Valarie was active in the neighborhood meeting and, since we were neighbors, we started chatting and began to build a bond. In 2010, I became the Secretary/Treasurer of VITFriends and continue to help to co-lead the Boston community. 

For the last six years, a few of us have been a part of the Harvard University first-year medical students training through the Patient-Doctor II coursework, designed to have them learn to diagnose different dermatological issues. Through the group’s activism, we’ve recorded several interviews to network channels to educate the public on the effects of vitiligo in a person’s life.

As we work together for the good of our vitiligo community and also for our local neighborhood, the bond between Valarie and I, who lives only two streets away, has grown and our hope is to continue working at this for a long time.

Sincerely, 

Valarie and Barbara