Quality of Life for Vitiligo Patients

Seemal Desai, MD: Heather, speaking of patients and their perception, let’s talk a bit about quality of life. I know you’re very passionate about that topic. I know you’ve spoken on that before, you do a lot on social media to educate and empower patients. Tell me how you approach talking about quality of life with a patient with vitiligo, because many in the health care world think vitiligo is benign, it’s simply cosmetic. But the patient suffering doesn’t feel like that. Talk to me a bit about that.

Heather Woolery-Lloyd, MD: This is something I am very passionate about. I can tell you that first of all, I practice in a very sunny place in Miami where everyone is exposed. So, arms and legs are frequently exposed, and a lot of my patients with vitiligo don’t want to expose their arms and legs because everyone can see their vitiligo. So, you’ll see a teenager coming in with long sleeves and long pants in the middle of summer, 95º outside, because they don’t want anyone to see their skin. Vitiligo has a tremendous impact on quality of life, similar to all of the inflammatory skin diseases we see, and similar to other medical conditions we see. Some people are affected more than others. I find that my female patients definitely are much more affected by their vitiligo. The other predictors, sometimes darker skin types are more affected, and of course, people who have vitiligo in visible areas.

The face, if we have extensive involvement of the face, it definitely affects quality of life, and studies also suggest that if you have involvement of sensitive areas like the genitals, that’s another area. So it tremendously affects quality of life. We can never underestimate the impact that has on your patient. When they come to see me, I open up that discussion and say, “I understand that this can be devastating for you,” and validate those feelings. It’s so important to validate that and say, “I understand. I know you think to yourself, ‘well, I shouldn’t really be worrying about this. It’s just my skin.’” And I say, “No, those feelings are valid that you’re having.”

Seemal Desai, MD: Exactly.

Heather Woolery-Lloyd, MD: I spend a lot of time reassuring, and validating those feelings because it does affect quality of life.

Seemal Desai, MD: I love the fact that you use the word validating, because so many of our patients have seen many of our colleagues, great dermatologists, but maybe they’re not interested in vitiligo. They’re skin cancer specialists or maybe they do more aesthetics. It’s an important discussion to have, that those 2 or 3 minutes of simply acknowledging that this is causing psychological impact, that’s your 5-star Yelp review right there. You’re getting your great Google feedback.

Heather Woolery-Lloyd, MD: I try to stay off of Yelp.

Seemal Desai, MD: Yes, I know, I don’t like that either. But I’m sure you’re very good at quality of life and encouraging patients. We’re going to come back to that because you also talked a bit about being forward looking and thinking ahead, and we want to talk a little about that because of the new treatments coming up. Brittany, I’m going to come back to you, we started with prevalence. You started giving me percentages; I love that. We talked a bit about the background. Let’s go back to pathophysiology, and let’s talk about vitiligo as an autoinflammatory, autoimmune inflammatory, condition, like rheumatoid arthritis (RA), like alopecia areata. What are some other comorbidities seen with vitiligo?

Brittany Craiglow, MD: Oftentimes we’ll see patients who have vitiligo and autoimmune thyroid disease, or vitiligo and alopecia areata. Or there will be a family history of somebody, the aunt has RA, or somebody has inflammatory bowel disease, these overlapping or sort of a Venn diagram of diseases that have shared genetics. And again, going back to those triggers, which are probably multifactorial, you have this predisposition to this disease. So oftentimes these things will co-occur in a patient or just in a family. But every so often, there isn’t a family history of anything, and I think patients feel like, “I don’t understand. Nobody else in my family has this,” or XYZ. I tell them, “Genetics is like Shake ’n Bake, and sometimes different things happen with you than your family members.”

Seemal Desai, MD: Yes, and by the way, you’re very good on social media too, I’m going to say. You’re also super out there, engaging, talking about these life-changing experiences that you’ve had for your patients with vitiligo and hair conditions. Probably all of you are much more social media savvy than I am. Ted, you’re pretty involved. Nada, you’re very involved as well. That’s a great way to educate and empower our patients, is to seek information from board-certified dermatology experts. All of us sitting here have the privilege of being those individuals. There are colleagues out there as well who are probably watching who are part of that also.

Transcript edited for clarity