Living with vitiligo can mean navigating through plenty of unanswered questions involving the condition. You may be curious about how vitiligo will progress, what treatments are available, and whether dietary changes can help restore pigment.
“I’m thinking improving my diet may prove helpful during my struggle with vitiligo,” one MyVitiligoTeam member said. Another asked, “Stress makes spreading my vitiligo worse, and I’m also having hypothyroidism — what kind of things are you doing so vitiligo doesn’t spread?”
To get to the bottom of a few burning questions, MyVitiligoTeam partnered with the Global Vitiligo Foundation to host World Vitiligo Day in June. At the event, dermatologists Dr. Pearl Grimes, Dr. John Harris, Dr. Nada Elbuluk, and Dr. Victor Huang discussed a variety of topics that can help you understand more about the condition. Check out several of the questions that attendees asked, along with responses from the dermatologists.
“There is a cohort of kids who may progress during puberty, but it's certainly not a universal phenomenon,” Dr. Grimes said. “I don't even think it occurs in 50 percent of kids.”
Dr. Huang offered a similar take. “We do recognize from the epidemiology that half of people with vitiligo will present before the age of 20,” he said. “And when you look at the characteristics of vitiligo that people have, it seems to be different. There are at least some suggestions in larger cohorts that the folks with associated autoimmune conditions, such as thyroid disease, tend to be from the groups that present later, after puberty. So I think there is a difference between the folks who develop their vitiligo earlier on versus those who develop it later in life.”
Dr. Huang takes a multipronged approach to managing depigmentation, which means addressing small spots differently than those that involve larger sections of skin. That may include a combination of topical therapies (such as ointments and creams), phototherapy, and systemic steroids.
“Thankfully, now there's this whole fourth category of investigational medicines that are available,” Dr. Huang noted. A new class of medications known as Janus kinase (JAK) inhibitors are under investigation and may be available later in 2021.
“Surgical treatments are available as well,” Dr. Huang said. “The idea being that, once the immune part has been resolved, if the fundamental problem is that we don't have enough melanocytes in the area, we can borrow melanocytes from other normally pigmented parts of the body and replace them into the part where they’re missing.”
“Unfortunately, there is,” Dr. Elbuluk said. “I always tell patients that no matter how successful we are at gaining repigmentation back, because they are genetically predisposed to vitiligo, there's always the chance that they could depigment again. And it could be in the same spots where they previously had vitiligo, and it could be in new spots.”
When Dr. Elbuluk sees people who have fully repigmented, she checks in with them every few months to review disease activity. If she sees new spots, she moves ahead with treatment again.
“There is a genetic component to this,” Dr. Huang said. “But the way I talk to my patients about this is to mention that in the general population, about 1 percent to 2 percent of people will have vitiligo. If you have a first-degree relative — a mother, father, brother, or sister — the risk of vitiligo goes up to about 6 percent. Even when you look at identical twins, that only bumps up the risk to 26 percent or 27 percent. When you look at those numbers, the more closely related you are to someone genetically, the greater your risk is to get vitiligo.”
When Dr. Huang sees people with vitiligo who are thinking of starting a family, he reminds them that there’s a 94 percent chance that their child will not have vitiligo. “So while there is a strong genetic component, it's not the only thing that drives vitiligo.”
“This is a really popular question,” Dr. Elbuluk said. “Unfortunately, we don't have any well-controlled studies that really allow us to give evidence-based recommendations about diet and vitiligo. But what we do know about the disease is that antioxidants can help the stabilization of vitiligo, meaning preventing progression of it. And they may even aid in repigmentation when people are doing other concomitant therapies, such as phototherapy, the topicals we use, etc. Based on what we know, I think there is a role for antioxidants, both in diets and as supplements in vitamins, in addition to the treatments that we do for vitiligo.”
Dr. Elbuluk noted that current data does not support any benefits of a gluten-free diet in people with vitiligo, unless they have celiac disease or gluten allergies in addition to vitiligo.
“Vitamin D is really a powerful hormone that regulates so much in our body, and I think it does play a role in pigmentation,” Dr. Elbuluk said. “I do check vitamin D levels in my vitiligo patients, and if they are deficient, I recommend replacing their vitamin D so that they are within the normal range. And there is some data to support that repigmentation in vitiligo does correlate with serum levels of vitamin D.”
Dr. Grimes agreed with the importance of checking vitamin D levels in people with vitiligo. “We should really be certain that our patients have healthy vitamin D levels. And if you don't want to check it, if you empirically have a patient take 2,000 international units of vitamin D, that's better than not addressing it at all.”
MyVitiligoTeam is the social network for people with vitiligo and their loved ones. On MyVitiligoTeam, more than 7,000 members come together to ask questions, give advice, and share their stories with others who understand life with vitiligo.
Do you have questions about vitiligo? Share your queries in the comments below, or start a conversation by posting on your Activities page.
In partnership with the Global Vitiligo Foundation, which strives to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support.
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I hate it!! I've had this since I was 8yrs old. My whole body is albino white. I hate it! Nothing helps to cover it.
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