What do you do when you get a skin condition that strips your skin of color–and your identity? Some might hide or give up, but not Priyanka Francis. The 17-year-old from Santa Clara, California, took her diagnosis in stride. Despite struggling with insecurities and social anxiety, Priyanka fueled her feelings into action. Today she’s a published teen author, vitiligo support group leader and future pediatric dermatologist. Here’s her story.
Name: Priyanka Francis
Hometown: Santa Clara, California
Years with Vitiligo: 5
LD: Priyanka–A lot of your story as a teen author and future dermatologist stems from your story with vitiligo, so let’s start there. When did you first get vitiligo and what was your diagnosis experience like?
PF: I was 12 years old when I noticed my first vitiligo spot at the corner of my mouth. However, it took about five or six months for me to receive a formal diagnosis of vitiligo from a dermatologist. I was first diagnosed with pityriasis alba by one dermatologist. The next dermatologist told me I had dry skin and that my patches would eventually go away. My mother had a gut feeling that they were wrong, and she continued to search for dermatologists. One of the last dermatologists I went to diagnosed me with vitiligo when I was 13 years old. I was very confused, as I didn’t know much about vitiligo. I felt angry that my dermatologist looked at me out of pity when she gave me the diagnosis. I wanted her empathy, not her pity. I was also scared, because I didn’t know when my vitiligo would stabilize and how it would affect me in the future.
LD: You were diagnosed as a teen–what did that feel like?
PF: I felt so many things when I was first diagnosed. I know what life was like before, and so adjusting to life after has been really hard. Nobody else in my family has vitiligo. When I would go in public, people would stare at me and I could tell that they were doing that. I became a lot more conscious of people’s reactions when they met me for the first time. I would introduce myself to people and they wouldn’t be looking at me, they would be looking at my vitiligo. It’s too easy to take every single action from another person and boil it down to, “it’s because of my vitiligo.”
LD: How did your friends react? Did this diagnosis impact you socially?
PF: I went to a small private school from preschool to eighth grade. People at school knew what my vitiligo was, so I got a few questions but I didn’t get bullied or made fun of. That definitely helped with the way I saw my vitiligo. Even thought it was hard for me in those first few years, I had the support of my friends, teachers and family. It was very impactful.
When I moved to a private high school, things were different. I became more self-conscious. I started wearing makeup. COVID also started during my first year, so my mask hid my vitiligo and I didn’t have to talk about it. Now that COVID is over, I don’t know how to break it to people. Half of my friends don’t know about it, and I don’t want it to change my relationships at school. My friends that know are supportive though. My friend told me: “When I first met you freshman year, I didn’t see you as any different, I just thought of it as a part of you, as someone having brown eyes or black hair, just another trait.”
LD: We love your friend already–you deserve that support. Tell us about your future career ambitions and what role vitiligo has played there.
PF: I would love to become a pediatric dermatologist. Vitiligo is something that is very personal to me, and I want to be able to help other individuals who may have vitiligo as well as other dermatological diseases. I have always enjoyed working with children, which is why I want to do pediatrics. I want to be able to provide inclusive, holistic, empathetic care to my patients, because I didn’t always have that care throughout my vitiligo journey.
LD: You’ve also connected with the vitiligo community. Tell us how you got connected with VitFriends and some of your work there.
PF: I first heard of VITFriends a couple years after I was diagnosed with vitiligo. I believe my mother found VITFriends online, she connected with Valarie, and I attended my first meeting in 2020. By that time, the Purple Patch Teens program hadn’t started, so when I joined the Zoom meeting I was surrounded by adults with vitiligo, but they all made me feel welcome. I mentioned this at World Vitiligo Day, but that meeting marked the first time I felt proud of my vitiligo. I showed it off and didn’t try to hide it. That experience was very moving, and it helped me realize that my vitiligo makes me unique and beautiful.
A couple months after I first joined, some other teens and their parents worked with my mother, me, and Valarie to create the teens subgroup of VITFriends, which we called Purple Patch Teens. Purple Patch Teens still holds monthly meetings to talk about our vitiligo, make plans for how we can get involved in vitiligo advocacy, and bond. My connection with VITFriends has caused me to change my mentality concerning vitiligo as well as get more involved in the vitiligo community, so I’m very grateful to them.
LD: You recently published a book–Limited or Limitless–about your journey with vitiligo. What inspired you to write that book and how can people access it?
PF: I was inspired to write the book after my participation at the 2021 FDA Patient-Focused Drug Development meeting, during which I shared my experiences as an individual living with vitiligo. I encountered many individuals who were struggling to live with their vitiligo, and even though I was at peace with mine, I wanted to help other people, especially teenagers, feel as though they weren’t alone.
Seeing that there were already many vitiligo children’s books, I decided to make a book geared towards teenagers. In the book, I talk about my life before and after my diagnosis, as well as how the way I see my vitiligo has changed over time. I also delve into the way that vitiligo has dictated my life, from the way I conduct myself, to the clothes I wear, and to my schedule changes due to treatments.
The book is available on Amazon Kindle, and the hardcover should be available by the end of July. But I would like to say that writing a book wouldn’t have been possible without VITFriends and my family’s support.
LD: What’s been the reaction to your book so far? Have you heard from your readers?
PF: Yes, I’ve heard from quite a few people. Valarie Molyneaux, the founder of VitFriends, said she started crying when she read it. I also just got an email from a woman who lives near me. She said she also started crying because she never felt more understood. She could relate to my story. People on the VitFriends Facebook page that I don’t know personally have congratulated me on the book, and that’s so encouraging to me! Honestly, even being able to touch one or two people alone is really special to me.
LD: You’re doing a lot today not only for yourself but for the vitiligo community. How do you feel about your vitiligo today and how are you choosing to move forward?
PF: Today, I am not embarrassed of my vitiligo, but I do cover it up with makeup. During the pandemic, I wore a mask that hid my facial vitiligo. Because of this, many of my friends don’t know today that I have vitiligo. I don’t know how to break it to them, so at social events when my mask is off, I wear heavy makeup to conceal my vitiligo. This doesn’t mean that I hate my vitiligo. It means that I choose to cover it. I also take Ruxolitinib and do phototherapy to treat my vitiligo, as I would like to repigment my skin. Once again, this choice to treat my vitiligo doesn’t mean that I dislike my vitiligo. I simply don’t want my visual difference to negatively affect my future opportunities.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.