Earlier this year I wrote an article on the skin disorder known as vitiligo. I was always curious as to what caused the skin disorder, why it happened and what could be done about it. Through writing the article I found out some of the answers to my questions and also attracted the attention of Nancy Balik FitzGerald who contacted me as a communication consultant working on behalf of the Vitiligo Working Group. The Vitiligo Working Group is an international organization that was first developed in 2011 at the Henry Ford Hospital in Detroit, Michigan. The physicians Henry W. Lim and Iltefat Hamzavi were the two doctors to first co-found the group. Together they lead the group of physicians and medical supporters from different backgrounds that all work together to share their treatments and to improve the lives of those struggling with skin condition of vitiligo. Ultimately, they hope to one day come up with a cure for the skin disorder. The group meets twice a year and has members from over fifteen different countries including some physicians from Canada. Through the help of Nancy Balik FitzGerald I was able to ask some of the top physicians and respected medical specialists from this group some questions about their group, what they have learned about treating vitiligo and their goals for the future.
To begin, I will introduce the physicians and medical experts that are all part of The Vitiligo Working Group and who were kind enough to take the time to answer some of my questions. First off, there is Dr. Ilefat Hamzavi who again is one of the initial co-founders of The Vitiligo Working Group. Dr. Iltefat Hamzavi is a senior staff physician at the Henry Ford Health System in the Department of Dermatology, located in Detroit, Michigan. He is also a teacher at the Medical School at the Wayne State University. Dr. Hamzavi also has his own dermatology clinic where he specializes in photodermatology and laser dermatology. He has also been very active in his research and investigations into both the causes and treatments of vitiligo. He became interested in vitiligo after he saw the devastating emotional effects that the disorder could have on individuals lives and the lives of their family members.
Another doctor on our discussion panel is Amit Pandya. He is a member of The Vitiligo Working Group and also one of the Board of Directors for the group. Dr. Amit Pandya is originally from India and also speaks Spanish. He is a Professor of Dermatology at the University of Texas, Southwestern Medical Center in Dallas, Texas. For more than twenty five years he had been working in larger cities with many people who had coloured skin. Over these years he had noticed how the people with vitiligo have suffered and that there was little research being done for this group of people. Due to the fact that their are few academic dermatologists with the time and funding to do research in this category of medical research, Amit Pandya took it upon himself to research and work in this area. He now works with people who have pigment disorders-mainly people with vitiligo and hyperpigmentation. In fact he is the only pigment disorder specialist in Texas.
Michelle Rodrigues is a Chair member for The Vitiligo Working Group in the role of the Global Social Narrative Creation Committee. She specializes in skin disorders and skin of colour. She is the co founder of Australia’s first multi-disciplinary vitiligo clinic. Although Michelle Rodrigues herself was born and raised in Australia, she is from an Indian heritage and also spent time working in Singapore. While she was studying dermatology she noticed there were few dermologists who specialized in skin with colour pigment disorders living in Australia. After seeing the stigma and devastation that happened to people who suffered from vitiligo she felt compelled to work in this area of dermatology.
Dr. Nada Elbuluk is a member in the Vitiligo Working Group and the Chair of Social Media Dissemination Committee. She is an Assistant Professor at the Ronald O. Perelman Department of Dermatology at New York University, New York. She practices both general and cosmetic dermatology. She specializes in healing people with ethnic skin conditions and pigmentory disorders such as vitiligo, melasma and hyperpigmentation as well as hypopigmentation. Dr. Nada Elbuluk always had an interest in pigment disorders and is happy to help her patients giving them hope when initially they had none.
Another doctor in the discussion group is: Dr. Pearl E. Grimes who is the Director of the Vitiligo and Pigmentation Institute of Southern California in Los Angeles, California. She is also a Clinical Professor of Dermatology at UCLA as well as a member of The Vitiligo Working Group and on their Board of Directors. At her clinic in California, Dr. Pearl E. Grimes has had people come to see her from all over the world. She has been very involved in the work of vitiligo for over thirty years and is involved as a clinician, lecturer and researcher on pigment disorders, cosmetic procedures, chemical peels, fillers and microdermabrasion.
Dr. John E. Harris is also a member of The Vitiligo Working Group and is also on the Board of Directors. Dr. John E. Harris is a Director at the University of Massachusetts Medical School(UMMS)Vitiligo Clinic and Research Center and an Assistant Professor of Medicine in the Dermatology Division at the University of Massachusets Medical School(UMMS) in Worcester, MA. Interestingly, Dr. Harris was studying juvenile diabetes when he became interested in autoimmune disorders(when the body attacks it’s own tissues). While doing his PHD thesis he was introduced to a patient with type 1 diabetes. This individual also suffered from several other autoimmune disorders such as Hashimoto’s thyroiditis, pernicious anemia and vitiligo. He felt that by studying the patients skin he could understand the cause of vitiligo and also find out the cause of autoimmune disorders.
The doctors of this group all agree that since the Vitiligo Working Group started a few years ago that they have all accomplished and learned a lot about working with and treating vitiligo patients. They all have a respect and understanding for each other as a group. One of the biggest accomplishments of the group was creating the video which is featured in this article called: Vitiligo: Truth, Hope and Change. The video was created to help bring some understanding and awareness for the skin condition known as vitiligo. The people in the video are all real people and real vitiligo patients. Many of them are patients of Dr. Pearl E. Grimes, as well as a few of the other doctors featured in this article. All the doctors mentioned in this article also appear in the above video. Above all, the video shows that it is a rather confusing, stigmatizing and emotionally heart wrenching journey to have vitiligo. Likewise, the above doctors all said that much of their initial therapy for their vitiligo patients is time spent listening to patients, providing hope and support to their patients and sometimes even providing psychotherapists or group counseling for their patients.
The individuals who are featured in the film, bare their souls and their stories, but have done so in the hope that it will cast a new light and pave the way for greater information and understanding of their disorder. The video director for this film was: Gordon Recht, DGA who is a two time Emmy awards winner for past films. He had studied and did some back ground work on the disorder before he began filming the video. Still, he too was surprised at the deep emotion he experienced as he listened to and filmed the patients stories.
The medical professionals of The Vitiligo Working Group want people to know that vitiligo is an autoimmune disease and not a cosmetic disease. It is not contagious, and there is nothing an individual can do to prevent themselves from getting the disease as it is a genetic disorder. That said, it is advised to avoid trauma and sunburns on the skin and to try and stay healthy to avoid increasing the spread of the disease. Some research has shown that antioxidants-particularly vitamin C and E could be helpful in stabilizing and possibly slowing down or fighting the skin disorder. There is also some research indicating that low vitamin D also plays a role in causing the onset of the skin disorder.
Although there is no cure for vitiligo, there are a lot of different and effective treatment options for individuals suffering from vitiligo. Some of the treatment options include: ultra violet phototherapy, topical steroids in creams and ointments, surgical grafting and oral supplements. Although the treatments are somewhat time consuming and involved, the doctors have found them to be highly effective for the most part. Each of the doctors mentioned in this article(and in the video) have stories about clients who were depressed, withdrawn and unhappy when they first came into their offices or clinics, but in time many regained their self confidence and returned to some of the their old lifestyle habits. Those who felt shy and uncomfortable before the therapy are now playing sports, acting and singing. They began wearing more stylish and revealing clothing and their favourite jewellery again that at one time they felt unfit or uncomfortable to wear due to their skin disorder.
One thing that all the doctors emphasized was that for the best results from the treatments it is best to start early, when one first notices a few white spots on the skin. Another interesting point to make about vitiligo is that it is often seen as a disease or infliction for coloured skin individuals. Even many of the doctors on this panel of discussion have said that they were especially drawn to vitiligo from working with coloured skin individuals. It is interesting to note that the disease seems to affect all races and colours equally, which is between 0.5 to 1.0% of each race. There are roughly 70 million people suffering from vitiligo world wide. Perhaps it is seen as a coloured skin disorder because individuals coloured skinned often have a more dramatic appearance from the skin lightening effect of vitiligo that makes it more noticeable. Likewise, fair skinned individuals often are able to hide or cover up their white spots on their skin easier with the use of make up.
There is still a lot of work to be done in the areas of research and therapy treatments with vitiligo. The medical professionals of The Vitiligo Working Group hope that this video and their continued efforts will help to teach and inform the public more about the autoimmune disease and that as individuals you can also help by giving funding to the group by donating on their website at: www.vitiligoworkinggroup.com. There is also a planned event in Washington, D.C. for next month with the World Vitiligo Day where both dermatologists and patients are invited to come together for a rally and for more information. This will be held on: June 25, 2016.
At this present time the group is also on the cusp of discovering new medications for treating vitiligo. For example, over the last five years the researchers have discovered a lot more about individuals’ immune systems and how it can sometimes attack the pigment cells that cause vitiligo. This brings hope for new treatments that may soon be available to stop the cells from attacking the pigments by immune supressing inhibitors called JAK inhibitors. For now however, much more research will be required before the medications can be approved and available for patients at clinics.