THE BLOG

All of the Lights: Vitiligo in Black and White

06/22/2015 02:43 pm ET | Updated Jun 22, 2016

2015-06-22-1434997500-7388218-mj.jpg

In May 2009, while doing my hair in the bathroom mirror, I noticed a dime-sized white spot on my elbow. I studied it for some time, moving my arm at different angles to get a better view. A sudden thought, accompanied by a burst of cold, ran through my body. Could this be that Michael Jackson disease? I ran to my phone to call my twin sister. She was calm but perplexed by my description and assured me everything would be okay. I just needed to make a dermatologist appointment in the morning. We hung up the phone and I returned to staring at the spot.

I had married only a month before, and as a 29-year-old newlywed and new member of the Obama Administration, this was supposed to be one of the happiest times of my life. Instead, here I was back and forth to this mirror, muttering short, distracted prayers. My mind flooded with worst-case scenarios if this was, in fact, that Michael Jackson disease. Would I completely go from black to white like him? How would my family react? My friends? Is my life over? When my husband came home that evening, I fell apart. His sweet, calm response only made it worse. This poor man married someone he thought would always be pretty. That night, I thought seriously about annulling the marriage. He didn't deserve to endure a color war in his new home.

The next day, I showed up to my dermatologist's office without an appointment. I had no patience for a receptionist's telephone script, 'cause nope, I couldn't wait for an appointment two weeks away. The dermatologist finally took a look at my elbow, asked a few gentle questions and recommended that I see a specialist at the Howard University Hospital Vitiligo Clinic.

I arrived there a few days later. The diagnosis was straightforward - it was vitiligo, an incurable condition that causes the body to destroy its own pigment. It was that Michael Jackson disease. I called my sister to give her the news. The specialist had said vitiligo could be hereditary, so my sister began a search of her body for spots. She noticed that her fingernail beds were not as dark as they used to be and made an appointment. It was confirmed again. Vitiligo.

The last five years have been a whirlwind for my twin and me. We've been receiving weekly ultraviolet light treatments in the hopes of both stopping the white patches from spreading and regaining our pigmentation. The treatments have been a blessing and a curse. We are very thankful to live close enough to a specialized clinic to receive them, knowing so many vitiligo sufferers do not have this option. The treatments do, however, require taking a lot of time during the work day each week, which is often difficult to do. And, to be completely honest, I just hate going to the clinic. It smells like generic Pine-Sol and sickness. Like disease and dread. Other vitiligo sufferers arrive for light treatments on the same day. We vary in age and disease progression, but are mostly African American. Some have lost more than 50% of their original hue, while others display contrasting white patches on parts of their brown faces, hands and arms. We sit together like a colony of lepers -- solemn and quiet -- awaiting our turn to step into that space machine to bake in the light. When we are together, we don't make much eye contact. Short, considerate glances are the respectable greeting for people who are subjected every day to constant gawking and rude finger-pointing outside of the clinic. All of us know this therapy has no guarantees, but hope is a fickle, ever important commodity in circumstances like ours.

While our skin is exposed to the light, the many social issues people with vitiligo experience are not. For those whose disease is advantaged, the social stigma can be incredibly daunting. Stares, rude comments and isolation are commonplace, as people avoid shaking hands or sitting beside you on public transportation for fear that vitiligo may be contagious.

Along with social stigma, we face a lack of support from the medical community. Many people with vitiligo do not have access to specialized clinics and are at the mercy of dermatologists who know very little about the disease. Even at my vitiligo clinic, I consistently encounter apathy and disengagement from my doctor. He is one of few experts in the world, but is never forthcoming with research or treatment updates. I've had to search the Internet for most of what I know about the disease.

I spoke to him recently about a skin grafting surgery that I learned is a common treatment in other parts of the world, he nonchalantly said, "Yes, I can do it (the surgery), but I don't do that anymore...too many administrative responsibilities now." Sooo, I thought, you are one of the few doctors in the United States who knows how to perform this surgery and you DON'T DO THAT ANYMORE? Vitiligo sufferers deserve compassionate doctors who are awake, aware and, quite frankly, doing their best. Otherwise, it might be time to retire.

There is also explicit bias in the dermatological treatment and insurance coverage of skin conditions. I recently consulted with a female Indian dermatologist for another medical opinion who said, "Vitiligo would likely be taken so much more seriously by the medical community and the FDA if it were more visibly obvious in white people." She explained that psoriasis which is two times more prevalent in Caucasians than in African Americans, has garnered much more support through research, treatment options, and insurance coverage than vitiligo. Both diseases are considered auto-immune disorders that are often treated by ultraviolet light therapy. Why, then, do insurance companies readily cover cost for light treatments for psoriasis and not vitiligo? Why is vitiligo classified as a 'cosmetic' condition, despite its severe physical, psychological, emotional and social impact? With 2 to 5 million people in the United States alone suffering from this disease, why does this discrepancy exist? Does one's pigment affect the ways in which skin is medically treated?

Vitiligo is not life threatening, but it is life changing. Losing my color has meant losing an important part of my personal identity. It has meant losing grip of my self-esteem, and some days, my mind. As an African-American woman, I have had to re-define exactly what makes me black. It can no longer be my skin color. As a black man, Michael Jackson struggled for decades with vitiligo, identity and public ridicule, and is still regarded as the greatest musician of all time. From his life and lyrics, I hope to glean strength and encouragement as I move forward. I want to believe him when he said, "it don't matter if you're black or white."

June 25th is World Vitiligo Day. VITFriends is an organization raising awareness about vitiligo and offering emotional support.