Build a Care Team You Trust
Whether you want to explore every treatment under the sun or manage your vitiligo as-is, it’s important to put together a care team you trust. Six people who live with the condition share advice on how to find medical specialists who put the T into teamwork so that you can manage your vitiligo together.
Seek out dermatologists who specialize in vitiligo.
Most dermatologists see only a couple of patients a year who have vitiligo. Many focus on aesthetic procedures, not research. As a result, they’re not up to date on the latest studies on treatments for vitiligo. I can’t tell you how many dermatologists I’ve seen over the years who told me there was nothing they could do to treat my vitiligo. I went home feeling way worse and with less money in my pocket. There are many organizations now that specialize in vitiligo advocacy and research, like the Global Vitiligo Association or VITFriends. You can go to their websites and see which doctors are on their executive board or connect with other patient advocates to find out who they recommend. It will make a huge difference. That medical spa may be great for your crow’s-feet, but they won’t know anything about how to treat your vitiligo.
Jackie McDonald, 59, a vitiligo advocate in Morro Bay, CA, and founder of Vitiligo Vanquish
Find doctors who focus on you.
Your doctor shouldn’t just dismiss your vitiligo, and they shouldn’t press treatments on you, either. I’ve decided not to pursue any more treatments for my vitiligo until doctors find a definitive cure. My dermatologist is fine with that. Over the next several years, as more treatments become available for vitiligo, you need a doctor who will take the time to go through the pros and cons of all of them with you.
Stella Pavlides, 77, founder and president of the American Vitiligo Research Foundation
Don’t let professionals dismiss your feelings.
People with vitiligo often suffer from depression and low self-esteem because of the condition. Those are valid emotions to feel. Your medical team should understand and provide support. When I was first diagnosed with vitiligo, I went to see a therapist. When I tried to describe what it was like to live with vitiligo – for example, how self-conscious I was wearing shorts or a bathing suit – she said, “Why? People who are overweight do that all the time.” If she’d bothered to research vitiligo at all, she’d have seen that it was a lot different. You need to find health professionals who understand the psychological toll of having vitiligo and can offer techniques to manage it.
Leah Antonio, 42, a vitiligo advocate in East Brunswick, NJ
Consider a clinical trial.
There are some very exciting treatments for vitiligo in the pipeline. Since they’re not available to the general public, the only way to access them is through a clinical trial. I deliberately chose a vitiligo specialist at a major medical center, Mount Sinai Hospital in New York City, since I knew they were on top of the current research. I was able to get into a study for ruxolitinib (Opzelura), which is a new type of topical drug to treat vitiligo known as a JAK inhibitor. Within a couple of months, my skin began to re-pigment, which meant the medication was working. It was really exciting to get access to this before the topical cream was FDA-approved and made available to the regular public.
Kim Bargiel, 43, a vitiligo advocate in Allendale, NJ
Loop in your primary care doctor, too.
A lot of people with vitiligo see a dermatologist, but they don’t talk to their primary care provider about their condition. But other autoimmune disorders, such as thyroid disease, are linked to it. My primary care doctor does a full bloodwork panel at my annual physical. They check me for other autoimmune conditions and nutrient deficiencies, such as low vitamin D levels, which are common with vitiligo. Since I’m on a JAK inhibitor now to treat my vitiligo, that can affect my immune system, too. My primary care doctor checks my blood cell counts to make sure I’m still within normal levels to keep my immune system healthy.
Look for red flags.
While there are many reputable dermatologists who treat vitiligo, there are also many who just want to take your money. When my daughter, who is now 32, was diagnosed as a child, I took her to various specialists over the years who claimed they could help us. We’d pay several hundred dollars up front for a visit, only to go in and be told that there was nothing the doctor could do to treat April’s vitiligo. If you call up a dermatologist and they say they don’t take insurance, that’s often a red flag.
Lori Mitchell, a vitiligo advocate in Redondo Beach, CA, and author of Different Just Like Me
Beware of snake oil.
If you Google vitiligo, there’s a lot of questionable stuff online. It’s always incumbent upon you, the patient, to do your due diligence before you try something that you’ve read about on the internet. Vitiligo is an inflammatory disease, so it makes sense to follow a healthy lifestyle: I cut out processed foods, practice mindfulness to ease stress, and get regular exercise. But anything that goes above and beyond that, I run by my doctor.
Sharon Pistilli, 52, a vitiligo advocate in Fairfield, CT