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 assemble a care team you trust. Six people living with the condition share tips on how to find medical specialists who will put the T together so you can manage your vitiligo together.

Look for dermatologists who specialize in vitiligo.

Most dermatologists see only a couple of patients a year who have vitiligo. Many focus on cosmetic procedures, not research. As a result, they are not up to date on the latest studies on vitiligo treatments. I can’t tell you how many dermatologists I have seen over the years who told me there was nothing they could do to treat my vitiligo. I went home feeling much worse and with less money in my pocket. There are now many organizations that specialize in vitiligo advocacy and research, such as 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 big difference. That med spa may be great for crow’s feet, but they won’t know anything about how to treat vitiligo.

Jackie McDonald, 59, 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 push you for treatment either. I have decided not to continue any further treatment for my vitiligo until the doctors find a definitive cure. My dermatologist is fine with that. In the coming years, as more vitiligo treatments become available, you’ll need a doctor who will take the time to discuss 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 the professionals dismiss your feelings.

People with vitiligo often suffer from depression and low self-esteem from the condition. Those are valid emotions to feel. Your medical team must understand and be supportive. 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 shy she was wearing shorts or a bathing suit, she said: “Why? Overweight people do that all the time.” If you had bothered to investigate vitiligo, you would have seen that it was very different. You need to find health professionals who understand the psychological cost of having vitiligo and can offer techniques to manage it.

Leah Antonio, 42, vitiligo advocate in East Brunswick, NJ

Consider a clinical trial.

There are some very exciting vitiligo treatments in the works. Since they are 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, as I knew they were aware of the current research. I was able to participate in a study of ruxolitinib (Opzelura), which is a new type of topical medicine to treat vitiligo known as a JAK inhibitor. Within a couple of months, my skin started to re-pigment, which meant the medication was working. It was really exciting to have access to this before the topical cream was approved by the FDA and available to the general public.

Kim Bargiel, 43, vitiligo advocate in Allendale, NJ

Also consult your primary care physician.

Many people with vitiligo see a dermatologist but don’t talk to their primary care provider about their condition. But other autoimmune disorders, like thyroid disease, are linked to it. My primary care doctor does a complete blood test at my annual physical. I am checked for other autoimmune conditions and nutrient deficiencies, such as low vitamin D levels, which are common with vitiligo. Since I am now taking a JAK inhibitor to treat my vitiligo, that may affect my immune system as well. My primary care doctor checks my blood cell counts to make sure I’m still within normal levels to keep my immune system healthy.

kim bargiel

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, now 32, was diagnosed as a child, I took her to various specialists over the years who claimed they could help us. We would pay several hundred dollars in advance for a visit, only to walk in and hear that the doctor couldn’t do anything to treat April’s vitiligo. If you call a dermatologist and say she doesn’t take insurance, that’s often a red flag.

Lori Mitchell, vitiligo advocate in Redondo Beach, CA, and author of different like me

Beware of snake oil.

If you google vitiligo, there’s a lot of questionable stuff online. It is always up to you, the patient, to do your due diligence before trying something you have read about on the internet. Vitiligo is an inflammatory disease, so it makes sense to live a healthy lifestyle: cut out processed foods, practice mindfulness to relieve stress, and exercise regularly. But anything beyond that, I direct to my doctor.

Sharon Pistilli, 52, vitiligo advocate in Fairfield, CT