"Speaking of Vitiligo..."

Vitiligo, disfiguring disease? Uniquely beautiful? What’s in a name?

Posted On: Friday, August 03, 2018 Posted By: John E. Harris Tags: Vitiligo Treatment

Vitiligo beautiful

We recently published a paper describing a possible new treatment for vitiligo. We’re excited about the study because it could be a “game-changer” among treatments for vitiligo – we believe it could have long-lasting effects after stopping treatment, unlike current treatments for vitiligo. The press became interested in this study, and I co-authored an article with The Conversation to summarize the results for the public. While it generated a lot of excitement, including social media, in that article I referred to vitiligo as a “disfiguring disease of the skin”, which seemed to touch a nerve among some of the readers. They were offended both because I implied that they were “disfigured”, and that vitiligo was a “disease” rather than a “condition”. Please let me give you some context around what we were trying to communicate.

"Who am I really, what do I do, why do I do it, and what do I think, huh?"
(Paraphrased from my favorite movie, Casablanca)

First, for those who don’t know me, I am a dermatologist and physician-scientist, and my entire life is vitiligo. No, I don’t have it myself, although at this point I feel like I do. My grandmother and her brother had it, and I remember the look of my grandmother’s hands with its white spots. I didn’t know what it was at the time, and it didn’t bother me. My grandmother was white, although she tanned easily and the vitiligo was indeed visible. I don’t know if it bothered her, but she never talked about it. She may not even have known what it was.

I spend one half day per week seeing patients with vitiligo, and this is very important to me. I love my patients, I connect with them personally, listen to their stories, tell them it is going to get better, and then I help them get better. I love that. I believe that I am doing good in this. Some of my patients honestly don’t care much about their vitiligo. Either their spouse made them come to see me to “make sure it isn’t dangerous”, or maybe a child’s parents did, or sometimes their doctor schedules the appointment and they’re “not really sure why”. When I meet these patients I chat with them a bit, maybe laugh about it, maybe talk about something unrelated, shake their hand, and wish them well. No need to do more, because they don’t want or need it. Many are happy to hear that their health is otherwise fine, and in fact, that they have a lower chance of getting skin cancer.

Hiding my tears in front of patients

Because I am a dermatologist who is known for treating vitiligo patients and spend my time doing this, I may have a skewed perspective of people with vitiligo. Those who love their condition probably don’t make an appointment to see me. But in my experience, most who have vitiligo do not love having it. Most want to get rid of it, and many are devastated by it. I watch patients sob in my office, parents who are devastated for their children who have it. One little girl tried makeup for the first time, looked in the mirror, and said, “Mommy, I’m finally beautiful”. Her mother cried as she told me this story, and so did her father sitting beside her. I’ve had parents ask me to promise that their son’s vitiligo would not spread further which, of course, I could not do. I hear detailed stories of bullying, and I tear up, but hide it pretty well. Oh, I’m almost always late for my patients, and it stresses me out (but that’s another story that I’ll explain in more detail someday). It sounds like a difficult job, and it is. I frequently go home exhausted after clinic, and most of my colleagues know that Tuesday evenings after clinic are not a good time for me to meet about things. I’m drained.

The upside!

But treating vitiligo patients is also awesome. I help them get better – almost all of them. And it’s exciting! I’ve watched my patients beam when I tell them they look great. They eagerly show me the new brown spots that appeared since their last appointment with me. They sometimes have to remind me that they used to have vitiligo on their faces, because I can’t see it anymore and forgot. One girl told me it was her birthday when I walked into her room for her appointment. When I asked why on earth she was spending it at the doctor’s, she said, “There’s no place I’d rather be than to come see you!”. She’s had a wonderful response to treatment and she was happy. It is a tremendous responsibility, but also blessing, to play this role in my patients’ lives. I like being a doctor.

Our research

In fact, I have committed my career (and life really, since the work does not stay at work, but follows me home, on vacation, etc., but I digress) to finding better treatments for vitiligo, and ultimately a cure. To do this, I run a laboratory whose focus is to better understand what causes vitiligo so that we can develop better treatments. I currently have about 16 people in the lab who work VERY hard every day to do this. The article that I posted was about a study that we spent 5 years working on, and it resulted in a very promising treatment, and we started this project from scratch. I admit I was, and still am, excited about it. But, of course, it’s pretty deflating to see that the only message some readers got from the article was that I called vitiligo a “disfiguring disease” and that they were offended. So back to the article.

The article summary – is vitiligo worth fighting for?

The study was published in Science Translational Medicine, a well-respected journal that seeks to publish potentially transformative research, particularly if it might influence treatment of patients. The media watches the journal closely, and they saw our article and became interested in writing about it. The article that I posted had 25,000 reads in 48 hours, which is way more than I ever expected, and I’m glad there has been so much interest. It’s important to scientists like me that we’re doing important work, because it’s hard. Really hard. In any case, a journalist from The Conversation contacted me to ask me to write the article with her. She selected the cover photo of the African woman with vitiligo, and I absolutely adore it – she’s beautiful. So, I prepared a reasonable summary, and one of her comments was that it needed an opening paragraph that clearly communicated the importance of the work – why was vitiligo worth treating, if it was just cosmetic? Why should anyone care about our work?

So, I wrote an introductory paragraph to communicate the effect of vitiligo on those who have it. I remember during my training, one of my dermatology research mentors told me that I have to find a way to tell people how devastating it is for patients to have vitiligo. Otherwise I would never get funding for vitiligo, pharmaceutical companies wouldn’t make drugs for it, and insurance companies wouldn’t pay for the drugs even if they were available. My mentor first used the term “disfiguring” with reference to vitiligo, and I thought it was a powerful way to communicate the devastation I saw in the eyes of my patients. And it also drove home the powerful stories I heard from those who were from societies that stigmatized the condition, including the gentleman who preferred to amputate his arm rather than let others know he had vitiligo. Actually, during World Vitiligo Day 2018, which we hosted at UMass Medical School, a pharmaceutical researcher came to me and asked, “Why are we making drugs for this disease if people actually like it? Should we be spending our resources and time on this?” It’s a fair question, and I believe so strongly that they need to know the truth about how devastating this condition is for so many. If they only attend conferences where the message is acceptance and celebration, they may not understand the tremendous need that exists.

My predicament

You can imagine that this puts me in a strange position. I am a physician who sees children with vitiligo and hears about their experiences being bullied in school. I want to go to the school to protect them, stand up for them. I tell them that they’re beautiful, that their spots make them who they are, and that they don’t need to cover them up or hide them. But I tell them that if they want them gone, I can help. And then I do. And I also spend a lot of time trying to find research funding, which is VERY hard to do, to continue our research to find a cure. And so, I have to tell those who don’t know anything about vitiligo that it matters. I have to make them understand, and use words like “disfiguring”.

In the end, vitiligo is beautiful, unique, unifying, disfiguring, devastating, and terrifying, all at the same time. I recognize that vitiligo means different things to different people. There isn’t a “right” or “wrong” way to view the condition. It’s wonderful to accept it, to see it as beautiful and, in fact, I do – one reason I love my clinic is that I find the patterns, the people with vitiligo, really beautiful. But it’s ok to cry about it and wish that you never had it. It’s also ok to want to reverse it, to get the color back and look more like other people. It’s ok to undergo treatments and change the white back to brown, or whatever shade is “normal” for you. Despite the protests of some that I have spoken with, it is indeed a “disease” – which is defined as “any condition that results in the disorder of a structure or function in an organism that is not due to any external injury” – whether or not a person chooses to pursue treatment. As a physician and a scientist, the term “disease” is the correct one, and using a different term would confuse everyone with whom I communicate.

How do we move forward, with one voice?

If possible, let’s please not argue about which terms to use and not to use – they’re all correct and different people feel differently. I recently read an awesome blog post by Erika Page on her website Living Dappled that addresses this issue in a very clear, pointed, and eloquent way – she states the importance of coming together and speaking with one voice to benefit everyone. If you get a chance take a look at it and engage with her. In summary, I want to help my patients whatever their perspective – I’m happy if they’re happy. And the good news is that I’m happy a lot. So, I’ll keep doing what I’m doing, and try my best to represent everybody, and respect everybody’s views of their condition. But in the end, I want to cure this disease, and I suppose that will influence how I think about it, the words that I use, and my motivation to get up in the morning. After all, I’m a fighter and I’m fighting, if not for everybody, then at least for my patients who ask me to.

Related Info and links used in this blog post:

Antibody blockade of IL-15 

The problem with celebrating vitiligo (As something beautiful) by Erika Page, Living Dappled

The Conversation: New treatment in the works for disfiguring skin disease, vitiligo

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