By Alisha Archibald, as told to Kendall Morgan
I first realized that I had vitiligo in 2014. I was getting ready for work — about to rush out the door — and, while combing my hair, I saw a small white spot at my hairline. It was on my forehead, about the size of a dime. I thought, “I don’t think I burned myself with the curling iron.” I brushed at it, and it didn’t go away. Immediately, I knew what it was because my grandmother had vitiligo. She’s been gone for 10 years, but my thoughts went right to her.
At first, I didn’t do anything about it. I was afraid to tackle it. I was in denial, perhaps, and thought maybe it would just stay as that one spot. But within a couple of months, I started to notice other spots. I began inspecting my body all over. I thought about my grandmother and how she had hidden herself. Back then, people didn’t know what vitiligo was. They would stare. They hadn’t seen models with vitiligo before like we have now.
It took me a couple of years before I finally went to the doctor. By that time, the spots had spread. I was wearing more makeup to try and cover them. Some of my relatives started asking why I hadn’t gone to the doctor. They’d heard about ways that maybe it could be reversed or slowed. The vitiligo was spreading over my face. I decided it was worth a try to see a doctor and find out what might be done.
The doctor was helpful. She explained that there wasn’t a cure, but there were treatments that might slow it down. There had been cases where people got some pigment back. I listened and decided to try it. She gave me two topical creams and I also got once-a-month injections, including a steroid. Within a month, I thought that I started to see where my skin had a little color coming back. I later learned that it wasn’t a good idea to stay on steroids long term; there can be side effects, so I stopped after about 5 months.
Going to the doctor helped me take control. It helped at a time when I felt like I needed more confidence. The doctor empowered me with more knowledge. I’ve accepted my vitiligo now. I’m not on treatment now, but I know that I have that option. Medicine is a science, and there are new treatments for vitiligo on the horizon.
Self-acceptance is ultimately what’s so important. You need to keep yourself encouraged. There will be days when you don’t feel like you have confidence. At those times, it’s good to rely on those around you who can encourage you when you can’t encourage yourself.
It helps me to be around others with vitiligo. I started a group called So Rare They Stare here in Athens, GA. I created this group to educate others on vitiligo and to encourage others who have vitiligo. It helps to surround yourself with like-minded people. I’ve always been a positive person. When I’m around negative people, I try to turn it around and focus on the positive.
I started seeing the impact of the group I started within the first few months. For example, an older lady in the group had worn makeup to hide her vitiligo for over 30 years. She told me that she cried because she went out for the first time wearing shorts and without makeup on her face. If I can help one person to be OK with themselves, it means so much.
In my community, people know me. I sometimes forget that I have vitiligo. I want to continue to do more to educate and encourage people so that we’ll see more people with vitiligo.
When I was a child, my grandmother didn’t want to go out of the house. We know that vitiligo doesn’t harm our bodies, but it can do harm psychologically. My hope is that people will find whatever works for them — whether that’s a support group or medication — to help them step outside the front door. That’s what’s most important.
Vitiligo May Be Autoimmune
What causes vitiligo is still largely unknown. We think there’s an autoimmune component to it. Vitiligo is typically associated with other autoimmune conditions. Going through your history is extremely important in vitiligo. Autoimmune thyroid disease is one of the most common conditions we see in someone who has vitiligo.
There are some newer therapies for vitiligo, and I typically use those when we haven’t seen any improvement with the older treatments. We have to weigh all of the risks and benefits of any treatment. We have to think about the potential side effects of any treatment, and cost is also a big issue for some patients.
There are many new and exciting medications in dermatology, but access to them can be a big barrier. Older therapies are better covered by insurance. I don’t want to offer someone a topical cream that they can’t afford when they go to pick it up at the pharmacy.
Start With Topicals and Light Therapy
For vitiligo, we start with topicals and light therapy. We create each treatment plan on an individual basis because vitiligo can be a hard, frustrating condition to treat. People typically have lifelong disease and must continue their treatment. There’s no guarantee that we will be able to restore [skin] pigmentation or that your skin will return to normal.
One of the newer medications for vitiligo are janus kinase inhibitors, also known as JAK inhibitors. None of these are currently FDA approved for the treatment of vitiligo, but this will likely soon change.
With this new class of oral and topical medications, we have to address the potential side effects that come along with treatment.
Excitingly, we do have a topical version of one of these medications called ruxolitinib, which is currently used in eczema treatment. There have been some encouraging studies for it in the treatment of vitiligo, including facial vitiligo.
Typically, when we use topicals, we don’t get as concerned about systemic side effects. However, with these topical JAK inhibitors, including ruxolitinib, we are still unsure [how much of the drug you absorb through your skin] and how it could relate to potential side effects. That’s still a question.
Protect Eyes and Skin
There are other health risks for people who have vitiligo. Our melanocytes are cells that give us our pigment and protect our skin from the sun. So when you lack pigment-producing cells, you’re at greater risk for sunburn. I talk to all of my patients with vitiligo about how extremely important it is to keep skin covered and to protect your skin from burns. People with vitiligo don’t have that barrier to protect their skin from the sun’s rays.
I recommend that people with vitiligo or anyone use a sunscreen that’s SPF 30 or above, broad-spectrum, and water-resistant. It’s really important to apply enough sunscreen to your skin and to reapply it also. Most people don’t apply enough sunscreen to their skin. You need to apply 1 ounce of sunscreen at a time. That’s enough to fill a shot glass. You should reapply it every 2 hours or after sweating or swimming.
Ultraviolet protection factor or UPF clothing is another thing I recommend. You can find these clothes at many stores these days. This clothing provides extra protection from the sun. It’s really becoming popular with kids, too. Kids are wearing rash guards when they play outdoors. Because we have pigment-producing cells in our eyes, too, it’s important for people with vitiligo to use sunglasses to protect their eyes when they are out in the sun as well.
Not Just a ‘Cosmetic’ Condition
Our skin is our biggest and most visible organ. People with any skin condition are at increased risk of low self-esteem and a decrease in their quality of life because of their skin condition. People with vitiligo often are affected by this. I think it’s important for me to educate my patients with vitiligo, especially children, so they can explain what vitiligo is to other people, such as on the playground or in school. I want them to be able to feel comfortable with the skin they’re in. Adults with vitiligo, too, and all of us, are prone to self-esteem issues when it comes to our skin’s appearance.
I notice that a lot of people talk about vitiligo therapies as “cosmetic treatments” or vitiligo as a “cosmetic condition.” I feel that the term “cosmetic” suggests that we are taking something normal and enhancing it. But with vitiligo, we are treating your skin condition just as we would any other health condition you have.
If you have vitiligo symptoms, coming in for a diagnosis from your dermatologist is important. That’s because other skin conditions can mimic or look like vitiligo. There are some rarer conditions we want to rule out first. There are some allergic skin conditions that can look like vitiligo.
Makeup and Self-Tanners
One thing I talk about with my patients is a makeup product called Dermablend to cover up skin. You may also use self-tanning products with dihydroxyacetone. Using a self-tanner product is completely OK if you have vitiligo. You can use it to cover up skin lesions if you want a more even appearance. If you go out and get a tan, you will only tan the rest of your skin.
I often recommend light therapy to people with vitiligo. This is one of my favorite treatments for this condition. It’s also called phototherapy. It’s a treatment that uses directed ultraviolet rays. Sometimes, when I recommend light therapy, my patients say, “Aren’t you a dermatologist? I thought the sun is bad for your skin!” But this type of light therapy should only be done as directed by a dermatologist.
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Lauri Vargo, MD, assistant professor of dermatology, University of Nebraska Medical Center, Omaha.