I am a physician-scientist who focuses my clinical and research efforts on vitiligo, and therefore I think about this disease a lot – all the time, in fact. Therefore I thought it would be helpful to share my thoughts with others who are interested in vitiligo as well, particularly the patients who suffer from it and their loved ones. I want to make clear that while I am affiliated with many vitiligo organizations, my comments in this blog are my own, and do not reflect the opinions of those organizations. In addition, my research is largely focused on finding new treatments, and ultimately a cure, for vitiligo. This work is supported by a number of sources, including pharmaceutical companies, which by definition creates potential conflicts of interest. In full disclosure, here is a list of our vitiligo research supporters. Please know that, to the best of my ability, all of my comments are unbiased reflections of my understanding of vitiligo as both a physician and scientist. I do not permit advertisements on my website, and do not endorse companies or products that may advertise on other sites that may be referenced here.
Ever since the report from Yale published about a vitiligo patient who improved after using Xeljanz (tofacitinib)and then our report about Jakafi (ruxolitinib) in another patient, there has been a lot of buzz around the use of JAK inhibitors in vitiligo. Many have asked me for updates on these new drugs for vitiligo by commenting below the blog posts, or tweeting, or emailing me, or stopping me in the hall, pulling me aside at conferences, etc. There have been no published reports since these first two, and I have to be careful speaking publicly about ongoing studies, discussions with companies, etc. But I will do my best to update you on the potential for these drugs in vitiligo.
Many of you have commented on this blog and sent emails asking about the results of a trial we conducted a number of years ago to test simvastatin (brand name Zocor) as a treatment for vitiligo. Before we became aware of the newer types of immune therapies, we were hopeful that existing, safe, and cheaper ones might be able to turn off autoimmunity and treat vitiligo. We first became interested in testing simvastatin after some observations we initially made in mice that get vitiligo. It actually worked in the mice, so we initiated a trial to test it in human vitiligo patients. . .
I just returned from the first Vitiligo International Symposium (VIS) held in Rome, Italy, where physicians and scientist from all over the world met to discuss their research. It was a great success, with over 200 participants from 32 different countries, including Italy (of course), the USA, the UK, Australia, South Africa, China, Japan, South Korea, Singapore, Germany, Egypt, Brazil, France, Morocco, Canada, India, Belgium, Taiwan, and others. The VIS was a 2-day conference that covered every aspect of vitiligo, including clinical treatments, how to measure improvement, basic science research to find out what causes vitiligo and how to find new treatments, etc.
I am sitting on the plane to Washington DC, preparing to attend the first World Vitiligo Day rally. Many are scheduled to attend, including patients, physician experts, researchers, and others who support the cause. During the rally we will listen to each others’ stories, hear from doctors who take care of vitiligo patients, learn about new research, and experience “vitiligo and the arts” through vocal performances and a fashion show. Excitement is building!
Recent Interview with DermTube.com "Ask an Expert", hosted by Adam Friedman, MD about the need to understand vitiligo as a skin disease, not simply a cosmetic concern, and stresses the importance of recognizing the impact of the disease on quality of life and the patient's psyche.
Well, here it is, the vitiligo awareness video that we began working on last September, 2015! “Vitiligo: Truth, Hope and Change”, and features a variety of vitiligo patients, their family members, and physician experts. It is touching, informative, and inspirational – take a look!
Did Michael Jackson have vitiligo? First, we know that he stated that he had vitiligo, although this was not until many years after rumors were flying about his “turning white” and his many surgeries. He said that his skin started to change sometime after Thriller, which was released in 1982, so he was about 24 years old when it started. After his death in 2009, his autopsy report provided evidence that he had vitiligo. Michael Jackson was undoubtedly an incredibly talented performer, maybe one of the best in history. The self-proclaimed perfectionist who was never happy with his music or his appearance must have been very self-conscious about the white spots appearing on his skin, visible evidence of a disease called vitiligo that refuses to be ignored. Overall the discussion is complicated, as was his life, but I think there are a few things that I can clear up in this post.
One of the most frequent questions asked by my patients and their families is about the role of diet and supplements in the treatment of their vitiligo. A quick search on the internet will return many claims about how special diets, vitamins, and other supplements treat or even cure vitiligo, and others to avoid, as they supposedly make vitiligo worse. Patients often feel that this is one thing they can control in their treatment strategy, and they want to try whatever they can.
I previously blogged about a trial conducted in the US to test the ability of afamelanotide (Scenesse) to improve the response of vitiligo patients to narrow band UVB (nbUVB). More recently, Clinuvel conducted a smaller clinical trial at the National Skin Center in Singapore, and the results are promising.