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    If you or someone you know suffers from vitiligo, then you are all too aware of the negative effects this skin condition can cause. Vitiligo creates white patches of skin that some patients find embarrassing. It can cause people to hide their skin, avoid wearing revealing clothing, or even shun certain social interactions. Vitiligo is a disease that can scar you deeply, interfering with all aspects of social and professional life. Scientists and researchers are working on new treatments for vitiligo, and some of them appear very promising. But there are already several therapies and methods that currently exist which you may want to consider if you suffer from vitiligo. In this article, we will explain some of these existing treatments and break down the positives and negatives of each one: Avoiding Stress There are a wide number of genes that make a person predisposed to vitiligo. However, being predisposed does not necessarily mean that you will be affected. The absolute majority of patients refer to their vitiligo as having been triggered by a stressful event. The stress they experienced simply resulted in an autoimmune reaction. Their own T cells (which generally are programmed to remove dysfunctional cells) started destroying their healthy pigment cells aka melanocytes. As the melanocytes disappeared, so did the melanin that gives the skin its pigmentation. The stress patients experienced may have been emotional (a divorce or the loss of loved one), intense sunlight (a vacation in Australia), chemical (summer jobs at a paint factory), a wound (dog bite), etc. While you may be able to temper vitiligo, the symptoms may come back as you get re-subjected to stress. Staying symptom-free will require a very holistic approach to your health. Mitigating stress, eating well, and exercising are just as important as the medical therapies presented in this blog. Camouflage or makeup One of the first methods that people suffering from vitiligo often consider is simply covering up the white patches with makeup or other cosmetic products. This can be an effective technique, depending on the severity of the issue and the location of the lesions. The downside is that this method is only a temporary fix. It tends to work well in places were we are used to wearing makeup, like our face. Camouflaging hands is more difficult, however, as it prohibits work, touching, shaking hands, etc. Camouflaging the entire body is, considering the amount of makeup needed, often insurmountable. Corticosteroids Corticosteroids are used to halt the progression of depigmentation. As steroids have anti-inflammatory properties, they hold back the T cells that attack pigment cells, giving the skin a much needed relief to regenerate. Corticosteroids can be produced naturally by the human body or synthetically in a lab. In the case of vitiligo, corticosteroids are often applied via a topical ointment. While some patients have found success with this treatment, it does not work for everyone. While corticosteroids temper the attack of T cells, they do not boost the presence of pigment cells, per se. Phototherapy is typically used to boost repigmentation. Some of the negative side effects of corticosteroids include atrophy, dyspigmentation, and glaucoma if used for an extended period of time. UVB and laser therapy Photo therapies are used to stimulate the growth of melanocytes in the depigmented areas. It is good to remember that repigmentation always requires a source from which pigment cells can regenerate. Small lesions can often be repigmented by the rim simply closing in on the affected area. However, rim growth is limited to 4 -10 mm (the darker the skin, the wider the rim growth). To be successful, larger lesions tend to require reservoirs of applicable stem cells present in the depigmented area. Hair follicles are often effective sources for repigmentation. Hair follicle driven repigmentation looks like a set of growing freckles reaching out towards one another. The skin may initially be somewhat “cobblestone-like,” becoming more uniform as the light treatment progresses. Lasers and UVB (ultraviolet 290-320nm) light is often used to stimulate repigmentation. Effective treatment tends to require 2 to 3 treatments per week for a sustained period of time (often one year). Patients tend to achieve considerable savings in both time and money by investing in home-based equipment. Using targeted lasers has the advantage of avoiding the risks associated with full body irradiation. Skin transplants Skin transplants are used whenever there are no stem cell reserves in the depigmented lesions. The transplants aim to transfer pigment-producing cells (melanocytes) from normal skin to the skin affected by vitiligo. Transplants may be as small as 1 mm in diameter, placed on regular intervals across the depigmented area. Photo treatment is used to stimulate the growth of melanocytes to fill up the space between transplants. The objective is to achieve a uniform skin tone over time. Depigmentation For patients with widespread but incomplete vitiligo on the face and/or other sites, depigmentation therapy may be an option. If the vitiligo has been resistant to other treatment and affects more than 50% of the body, some dermatologists may suggest this technique. One of the benefits of depigmentation is that it is of a permanent nature. But the downsides include the need for strict sun protection to maintain the benefits, slow response time to the treatment, and a need for touch-up sessions. Darkly pigmented people may also feel disconnected from their own social environment. It is good to remember that effective treatment of vitiligo always requires arresting the progression of the disease, stimulation of repigmentation, and avoiding a relapse. In practice this tends to require a balanced approach between different therapies covered above. It’s important to understand that you do have options for dealing with vitiligo. Of course, as new treatments are developed, better and more effective breakthroughs may provide even more results. But in the meantime, the options listed above could help mitigate some of the symptoms. Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist.

  • Where is the treatment of vitiligo going?

    The annual conference of the American Academy for Dermatology is the place to go whenever you want to engage in meaningful dialogue with researchers and clinicians at the top of their game. The 2019 Conference (March 1-5) in Washington DC was no exception. From a vitiligo perspective, the conference gave a glimpse into how novel therapies are evolving. The approach to the treatment of vitiligo follows a proven pattern. Effective management of the disease requires: 1. arresting the spread of depigmentation, 2. promoting repigmentation in vitiligo lesions, and 3. the prevention of relapse. To be successful, any treatment must address all three of these focal areas. These three approaches are central for both present and future attempts to permanently restore pigmentation to vitiligo affected skin. Common treatments today The most popular approach to the treatment of vitiligo today combines steroids or calcineurin inhibitors to suppress the autoimmune component of the disease, with light therapy (typically UVB or laser) to promote the growth of melanocytes. To be effective, phototherapies tend to require 2-3 sessions per week over a prolonged period of time (often a year). Patients often find the commute to treatment centers to be highly time consuming and hard to justify. Relapses are common when realities of life create disruptions in the program. While home-located light treatment platforms require space, they tend to provide much greater flexibility, patient satisfaction, and even reduced out of pocket costs. While steroids or calcineurin inhibitors may be used to arrest advanced disease, large lesions may prove difficult to depigment. In order to understand why, we need to see how melanocytes grow back into the repigmented areas. Repigmentation is dependent on available reserves and can take place either by the activation of stem cells in the center of the lesion or by the perimeter closing in on the depigmented area. The latter is limited by the fact that the growth seldom exceeds 10 mm. Repigmentation from the center tends to start from stem cells typically residing in hair follicles. These islands of pigmentation start out resembling freckles that often grow together, resulting in continuous depigmentation over time. Whenever stem cells are depleted as a result of long-term vitiligo, transplants have proven to be an effective source to bring pigment cells to the center of large lesions. These transplants may be as small as 1mm in diameter, and they are transplanted equidistant from one another to form reservoirs from which melanocytes can spread to ultimately form a uniform layer. The spread of melanocytes is typically boosted with intensive light treatment. Some treatments under development In 2019 we see a strong focus on the development of complementary methodologies for the treatment of Vitiligo. TeVido Bio Devices is a recently funded startup that prepares cell extracts of a patient’s own skin to be transplanted to repigment vitiligo lesions. The methodology is minimally invasive and can cover 10 times the area of the original tissue. TeVido Bio Devices will offer its services to dermatologists in May 2019. The laboratory of Dr. John Harris at the University of Massachusetts is working on using JAK inhibitors to shield melanocytes from being taken out by T cells. The methodology is very promising as JAK inhibitors already hold FDA approval for other applications. JAK inhibitors are in Phase II clinical studies and may be accepting patients to phase 3 clinical trials within a foreseeable future. The laboratory of Professor Caroline Le Poole at Northwestern University, Chicago has developed a methodology based on a modified version of the heat shock protein HSP70i. By injecting DNA coding for the modified protein, the plasmid has been able to reverse vitiligo in both mice and swine. This well-published therapy is being developed towards clinical trials by Temprian Therapeutics Inc. The fact that Vitiligo relapses in the same place time after time has led researchers to understand that the skin must hold a memory of past attacks. This hypothesis has led Prof. John Harris to investigate resident memory T Cells that stay embedded in vitiligo lesions. The resident memory T cells are subject to research that may very well hold future therapeutic value. The beauty of the therapies under development is that they all support one another. When successful, these treatments would provide patients and clinicians with an effective tool kit to stop the progression, to stimulate the repigmentation, and to prevent relapse. Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist.

  • Temprian Therapeutics accepted to S2S

    The Northwestern startup Temprian Therapeutics has been accepted to this spring’s Science to Startup (S2S) expo in Cambridge, Massachusetts. This invitation-only event will put 12 startups in front of 150 pharmaceutical investors on the 23rd of April. This is an important step in bringing a novel treatment for the depigmentation disorder vitiligo closer to the market place. To date there is no cure for this disease, that causes depigmentation in almost 3 million people in the US alone. Vitiligo is a depigmentation disorder that affects 0.5 – 1% of the population. There is no cure for the disease to date. The therapy at hand has been incubated at Loyola and Northwestern Universities.The concept was originally promoted to S2S by INVO (Innovations and New Ventures) at Northwestern. The competition received 170 applications from across the globe, which speaks volumes to the rigor of the process. The proposed therapy is built on years of research by the laboratory of Professor Caroline Le Poole. In vitiligo, stress in patient skin cells triggers the production of large amounts of the heat shock protein HSP70i. Once released from affected cells, HSP70i causes recruitment of T cells to form an immune response. In people with a genetic disposition to vitiligo, the immune response results in the elimination of pigment cells. As a result their skin gradually turns white. This process has proven very difficult to permanently reverse. The Le Poole lab has developed a variant of the HSP70i protein that tempers ongoing immune responses. Injected into the skin in DNA format, modified HSP70i tempers the activity of T cells, allowing the safe return of pigment cells. To date the treatment has been shown to reverse vitiligo in 2 live disease models. Temprian Therapeutics is focused on taking the therapy to clinical trials. Starting March 15, Temprian is hosted by the life science incubator MATTER in Chicago. “The support we received from the INVO Forward, MATTER, and S2S programs create an excellent scaffolding to launch a successful startup”, says Temprian’s CEO Kettil Cedercreutz. Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist.

  • Vitiligo Patient Organizations

    Vitiligo is a disease that can drastically affect the lives of people who struggle with it. Many people suffering with vitiligo often feel helpless or overwhelmed in social situations. That’s because vitiligo, which manifests itself in white skin patches, can cover large areas of the body and make even ordinary tasks seem daunting or embarrassing. Fortunately, there are a range of resources at the disposal of vitiligo patients. New treatments are being researched, and there are many organizations offering support and guidance to people who suffer from vitiligo. This article will cover some of these vitiligo patient organizations in the United States and detail just what they are doing to support those who struggle with this disease. Vitiligo Research Foundation Headed by Executive Director Yan Valle, who has written much literature on the subject of vitiligo, the Vitiligo Research Foundation supports a wide range of vitiligo research. They support lab-based science, clinical trials, and they believe very much in the value of collaboration. In fact, they make sure their research data and bio samples are made freely available to academic researchers. They also offer master classes for those seeking to learn about the latest treatment techniques and discover knowledge from doctors, researchers, and Vitiligo Research executives. The Foundation was started by Dmitry Aksenov in 2010. His daughter was diagnosed with vitiligo at an early age, and he wanted to do so mething about it. He realized that vitiligo was not getting the research or publicity necessary to make meaningful progress, so he started the Vitiligo Research Foundation. The nonprofit organization works with top specialists in the field, to unlock the secrets to the most effective treatments for vitiligo. Vitiligo Support International Founded in the year 2000, Vitiligo Support International is a patient-driven organization that offers support to those suffering from vitiligo via education and community outreach. Randy Salter, a vitiligo patient who had found success treating his own vitiligo, wanted to spread his message of success to the vitiligo community. With the dawn of the internet, he saw the need for a website dedicated to vitiligo, to provide a place for patients to communicate and organize. In 2003, he met Jackie Gardner, who had experience in public relations. With her guidance, the organization went from an online community to real-world activism, lobbying in Washington, D.C. and spreading awareness through medical conferences and clinical trials. Vitiligo Support International now boasts over 50,000 members, and they continue their mission to improve the lives of people suffering from vitiligo. American Vitiligo Research Foundation In 1995, the American Vitiligo Research Foundation began in Stillwater, Florida by Stella Pavlides. The foundation continues to be run from the home of its founder, and they focus on awareness and community outreach. One of the main ways the American Vitiligo Research Foundation promotes vitiligo awareness is by preaching diversity. They aim to foster an environment of acceptance for people suffering from vitiligo, who all too often are shunned by society for the appearance of their skin. Diversity is a concept with which many people are familiar, so by framing vitiligo in this context, the foundation is hoping to destigmatize the disease and make life easier for those who suffer from it. Even as awareness of vitiligo grows, and organizations like these do their part to improve the lives of patients, continued research and outreach is necessary. This disease is more widespread than many people realize, and those who suffer from it often struggle in their daily lives. To get involved with a vitiligo organization in your area, a quick search of the web can reveal many such groups that are more than happy to help. Hopefully, these groups and countless others will continue their efforts to combat a disease that affects the lives of so many. Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist.

  • Vitiligo and Skin Damage

    Vitiligo and Skin Damage You might already know a lot about vitiligo. Vitiligo is however a complex disorder. No matter how much you know, there is always a lot to learn. The disease comes out differently in different people, and ongoing research is giving us an ever richer picture of what is truly going on. People who are familiar with vitiligo know it from the white lesions of skin that appear on the hands, arms, face, and other areas. People tend to be very frustrated with white spots on especially face and hands. Today there are however famous models and celebrities who wear their vitiligo proudly, leading to more awareness than ever before. But when it comes to the root causes of this disease, many people are still unfamiliar with the details. In this article, we’ll go through some basic facts about things that may trigger vitiligo, so you can be more in the know about this particular disease. Genetic predisposition Some people don’t realize that vitiligo requires a genetic predisposition. Researchers have found more than 50 genes that contribute to the disease. While vitiligo tends to run in families, having the genetic makeup does not necessarily mean that the disease will break out. Studies of identical twins show that only in a quarter of the cases does vitiligo break in the twin of a person struck by the disease. The disease is evidently caused by a combination of triggers and a genetic predisposition. Stress in general tends to trigger vitiligo. Here we are not speaking only about physical stresses but of mental stress as well. Stress as a trigger In order to understand how stress triggers vitiligo, we need to look at the mechanisms causing the disease. Vitiligo skin is characterized by the absence of cells that produce melanin, so called melanocytes. Melanocytes typically disappear as the result of an immune response. The body has somehow got it wrong, and thinks that pigment cells are intruders and do need to be taken out. Diseases where the body attacks our own cells, are called autoimmune diseases. In reality vitiligo is an autoimmune disease caused by so called T cells reacting to our melanocytes. So how does stress cause this misunderstanding? To survive, living organisms have over millions of years developed ways to take care of the body in times of stress. If you as an example scold your skin with hot water, the cells immediately express heat shock proteins that scaffold the cells, so that they do not collapse. Whenever a heat shock protein exits the cell, it may take with it a small part (a marker) from the stressed melanocyte, and ignite your immune response, driving T Cells to kill cells having this particular marker. This “request” starts the avalanche. So two things are needed for vitiligo to accrue, a generic disposition, and a triggering stressful event. What are some typical stress factors that cause vitiligo? Wounds: When the skin is impacted by a wound, such as a puncture or a scratch, the resulting response can sometimes cause vitiligo. Scarring and wounds cause the skin to be disrupted, which opens the door for heat shock proteins to ask for the destruction of pigment cells. Sunlight: Overexposure to the ultraviolet (UV) rays of sunlight is another potential trigger for vitiligo. UV rays are dangerous for a number of reasons, including a link to skin cancer and other damage. Vitiligo is just one of the reasons to be careful if you experience repeated exposure to the sun. To avoid any excess damage, it’s important to wear sunscreen with a potent SPF rating whenever you know you’re going to spend a lot of time outside in the sun. Chemicals: Certain chemicals have been known to cause damage to melanocytes. These chemicals look like the material used to make pigment, and are converted into products that are toxic to the pigment cells. When the pigment cells become damaged, it can trigger vitiligo symptoms. Depending on whether or not you have the genetic predisposition for vitiligo, you may be more likely to experience expanding depigmentation resulting from such chemical exposure. Emotional stress: One of the lesser-known causes of vitiligo is mental or emotional stress. Such stress likewise causes a stress response in your cells. As our understanding of the disease continues to evolve, medical experts are discovering that stress is linked to more symptoms than previously thought. Stress or anxiety can cause your body to fire off immune responses causing or exacerbating vitiligo. Understanding a disease like vitiligo is the first step to recognizing what you can do to prevent or treat the disease. Avoiding these triggers whenever possible is key to reducing your risk. However, if you are genetically predisposed to vitiligo, managing the disease may not always by that straight forward. Fortunately, there are many treatment options with more in development. As awareness of vitiligo continues to grow, people are becoming more accepting and less embarrassed about the skin splotches that come with vitiligo. Still, it’s a good idea to avoid the triggers mentioned in this article, to reduce your risk if possible. Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist. Photography by: Andrea López

  • Vitiligo Patient Organizations World Wide

    Vitiligo is a disease that many people are not familiar with. Unless you or a loved one have experienced this disease, there’s a good chance you’re not aware of how widespread it really is. And even people who suffer from vitiligo–or know someone who does–may not know just how many organizations there are worldwide offering support for patients. The truth is, there are vitiligo patient organizations and clinics all over the world, even in countries where you might not expect them. Below we highlight some of them. Nigeria The Vitiligo Support and Awareness Foundation (also known as VITSAF) is a no-profit organization that advocates for patients in Africa. Founded in Nigeria, this organization is passionately concerned about patients’ needs. They are currently the only organization in West Africa that focuses on vitiligo. They offer support for individuals, especially women, who have been affected by vitiligo with field offices all across Africa. They also participate in World Vitiligo Day – June 25th – to help spread awareness about the disease. Italy In Rome, Professor Torello Lotti, MD, is the President of the World Health Academy of Dermatology and specializes in vitiligo. He also teaches at the University of Studies Guglielmo Marconi and is one of the leading voices on vitiligo in the world. The World Health Academy holds dermatology summits dedicated to helping spread awareness of vitiligo and other skin conditions. Conferences like these are essential to bringing together the leading minds of dermatology, to help further vitiligo treatments across the world. UK At the Cadogan Clinic in London, they employ plastic surgeons and dermatologists who specialize in treating patients with vitiligo. With photodermatology and LED light therapy available at the clinic, it is one of the best places for UK vitiligo patients to consider getting treatment. Dr. John Ferguson, one of the physicians at the clinic is renowned as a vitiligo specialist, and he has published articles on a wide variety of dermatological subjects. Although he mostly sees adults, he does occasionally treat children as well, providing their issues fall within his specialties. France At the University Hospital Henri Mondor in France, there is a specialized dermatology department which offers treatment to patients with vitiligo. A number of their physicians have published well-regarded journal articles and other materials concerning the disease. Insitutions like this are essential to raising awareness and also furthering the research necessary to develop new treatments and potential cures for vitiligo. India At the MelanoSite Medical Clinic in New Delhi, they focus on patient counseling to make sure that vitiligo patients understand the nature of the disease and also the best ways to manage it. They emphasize the importance of having a positive attitude when it comes to vitiligo. Many patients unfortunately struggle with embarrassment or other psychological issues associated with vitiligo, so counseling and other support is essential when it comes to treating the disease adequately. MelanoSite believes in a holistic approach to treating vitiligo, and they treat patients all over India. It can be easy for vitiligo patients to feel hopeless, like they have no way to combat the disease that affects them every day. But the truth is, no matter where you are in the world, there are organizations, physicians, and clinics working around the clock to try and tackle this disease in a variety of ways. If you or anyone you know struggles with vitiligo, do your research to find an organization near you that can help. Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist.

  • Vitiligo in the Limelight

    For many years vitiligo was a disease that people in the US knew very little about. Although the condition was more common than most people thought, there was not widespread awareness of it. In countries like India and Pakistan, public awareness followed a different trend. The condition held a long tradition of stigma leading to widespread misperceptions and discrimination. As the general public often thought vitiligo might be contagious, patients felt ostracized and did their utmost to hide the conditions. Today, electronic media is contributing to a more uniform and informed view of vitiligo across the globe. As society has become more accepting of various skin tones, people with vitiligo are being increasingly celebrated. Today there are many models, actors and public figures who have vitiligo and who wear the condition with pride. Thanks to numerous articles published over the past few years, more people are getting their vitiligo facts straight. An abundance of blogs and forums on social media cover the topic from a variety of perspectives. The coverage shows an international audience the breadth and scope of efforts made to combat and adjust to the disease. Bringing awareness is important, as it helps to de-stigmatize vitiligo. Accessible dialogue provides more accurate information to the general public. Bringing awareness to the causes, symptoms, and treatments of vitiligo is a good way to lift the veil. Increased information simply promotes acceptance. While blogs and newspaper articles are important to the general public, scientific publications put vitiligo in the focus of the medical and scientific community. Even though these publications target scientists, they hold a lot of information that easily opens up to the casual reader. Let’s take Dr. Caroline Le Poole’s and Dr. Shikar Mehrotra’s 2017 article in the Journal of Investigative Dermatology as an example. The introduction is a great read also for non-scientists as it starts by outlining basic facts about vitiligo. Did you, for instance, know that the Indian leader Nehru declared vitiligo as one of the three most important health issues, that approximately 0.5% of the world’s population has the condition, and that the onset of the disease tends to spike at the ages of 15 and 45? Scientific papers give answers to questions, that you may never have thought of asking. Le Poole’s and Mehrotra’s article goes on to explain that vitiligo actually is caused by an immune malfunction. The root cause of vitiligo, as the article describes it, is when the body mistakenly identifies a threat and sends T cells to kill pigment cells. This causes discoloration of the skin resulting in white lesions typical for the disease. These white patches can appear on the hands, face, legs, torso and the intimate parts of the body. Progressive lesions tend to cause great stress to vitiligo patients, many of whom feel embarrassed about their condition and may choose to cover their lesions with clothes and makeup. Patients may also struggle to form intimate relationships as they fear rejection because of their lesions. Although vitiligo is a disease that can greatly impact the patients’ quality of life, strides are being made to alleviate the symptoms. Scientists like Dr. Le Poole and Dr. Mehrotra are both finding solutions as well as documenting the progress in fighting the disease. This results in both new treatments and in raising awareness about the condition. The increasing level of dialogue both in electronic media and medical journals provide vitiligo patients with the confidence that they are not alone. There is an entire community of researchers, scientists, and medical professionals working tirelessly to find new effective ways of treating vitiligo. Disclaimer: The information on this blog is intended for orientation purposes only. For medical treatment options please consult your dermatologist.

  • If they want to knock me off TV they will have to fire me!

    When Lee Thomas was diagnosed with vitiligo, he was a 25-year-old TV reporter and a rising star in Detroit. It all happened during some very formative years. While being diagnosed with vitiligo is stressful under any circumstances, you can only imagine how it felt for a person in the public eye back in 1992. Back then vitiligo was a well-kept secret. In the early 1990s, the cause of vitiligo was still unknown. Scientists had not agreed on the principles that made people suddenly start losing their pigmentation. The notion that vitiligo was an autoimmune disease was being formulated but was nowhere near to being recognized. The patient community was scattered. Dermatologists and scientists had little contact with one another. As there was no accepted theory for the cause, nobody was able to formulate an approach for a cure. As a result, patients were by and large suffering in solitude. Lee Thomas’ first reaction to having vitiligo was that of shock and anger. As a news anchor, he said he felt he was going to lose everything. After the first shock was over, he started to turn grief into action. He embraced his identity as a reporter and went out on a long-lasting research spree. He wanted to know everything about vitiligo! As his understanding matured, he started to fight for his life on every level. He fought to maintain his positive, happy-go-lucky personality. He became determined not to become a recluse. Ultimately he decided that if they wanted to knock him off TV, they would have to fire him! His fight soon moved from a personal sphere to a fight for the entire vitiligo community. It started with him establishing the vitiligo support group V Strong in South East Michigan. He reached out to Dr. Henry Lim at Henry Ford’s Health System, who welcomed his energy and enthusiasm. Dr. Lim helped Lee’s support group obtain space within the walls of the Henry Ford Health System. Lim further made sure that every V Strong support group meeting was attended by an MD. As a result, vitiligo patients in the Detroit area started to get a more nuanced view of the disease. They were soon able to distinguish between science-based and what Lee Thomas calls “snake oil”-based treatments. The support groups provided comfort by allowing vitiligo patients to share their history and journey with one another. An inclusive patient community was in the making, and it was growing fast! Today Lee Thomas sees V Strong as a vibrant community providing the opportunity to share in one’s loss, sorrow, hope, and pride. Nationwide, many gaps are closing. Doctors, scientists, patients, and pharmacologists are talking as the vitiligo community is redefining itself. The discussion within the community has led to a number of approaches to vitiligo. Some patients are calling vitiligo a disease and are vividly supporting the development of novel treatments, whereas others describe the pigment loss as a disorder, hoping that their skin condition is seen as a part of natural diversity. Lee Thomas has an understanding of both perspectives and emphasizes that people decide for themselves how they adjust to vitiligo. From Lee’s personal perspective, it is, however, important to call a spade a spade. “We need to call vitiligo a disease. If it is not a disease, we will not get resources, and if we don’t get resources, we will not get a cure. It’s that simple!” Getting to a point where the future looks bright has, however, been a long and deliberate battle, fought on a number of fronts. Lee does not want the gains of this struggle to evaporate into thin air. As an African American, Lee Thomas also looks at vitiligo through the lens of his community. Vitiligo is hard to carry for anyone. For a darkly pigmented person, the contrast caused by the disease becomes hard to hide. For a member of the African-American community, vitiligo may further feel like an attack on a person’s community affiliation. For black males, vitiligo may even feel like an attack on one’s masculinity. “Vitiligo forces you to think through your identity as an African American beyond skin color,” says Lee Thomas. While this may seem obvious, it may require a lot of soul searching. The adaptation is, further, a two-way street. It provides an opportunity for growth, both for the individual as well as for the community. “In this respect, we have over the past 20 years come a long way,” says Lee Thomas. On a highly personal note, Lee Thomas sees people’s reactions to vitiligo as something that takes time getting used to. “In the beginning, everybody was staring at me.” Lee says that he had to make a specific choice to allow people to stare. Initially, he thought that people were staring because they judged him in a negative way. After a while, he understood that there was not necessarily malicious intent. People just did what he did himself when he got the disease. “You stared at all the different color of the lesions, trying to understand what is going on in your skin.” You can’t fault people for staring. Coming to that realization has helped Lee find harmony in his social interactions. When you casually mention vitiligo in a discussion, many people bring up a friend or a relative who has the disease. From here the discussion often shifts to celebrities with the disease. The first name to come up tends to be Michael Jackson, followed by both Lee Thomas and the photo model Winnie Harlow. For Lee Thomas going public with vitiligo was to some extent a reaction to the mysticism portrayed by Michael Jackson’s approach. As Michael Jackson did not want to speak about vitiligo in public, Lee Thomas felt he wanted to fill the vacuum. In 2007 he published the bestseller Turning White: A Memoir of Change where he opened up a dialog both within the vitiligo community itself, as well as with the general public. Turning White made Lee Thomas a role model patients could identify with. The vitiligo movement was gaining momentum! Today the vitiligo community stays in touch with each other both through actual meetings as well as through online forums. Facebook groups with more than 20,000 members provide forums where patients can share information with one another. Shared experiences, videos, and pictures are reducing the collective stress and stigma. 20 years ago, it would have been difficult to imagine photo models with an uneven skin tone. Today Winnie Harlow is a person who’s easy to admire and identify with. People are proud to put out their photos without makeup or camouflage. Openness has made the vitiligo community both visible and accessible. A self-aware community that demands a cure is seen as a community that deserves one. This was definitely visible at the World Vitiligo Day Conference in Houston in June 2019, an event that attracted patients, scientists, clinicians, and startup companies engaged in getting new therapies to clinical trials. When looking at the future, Lee Thomas sees several effective treatments coming together. In a decade or so, we may be in a situation where vitiligo is a disease that, once diagnosed, responds to a standard set of treatments. Lee Thomas’ work does, in a tangible way, bring this day closer. When Lee Thomas gets the question of what he would say to a young person getting vitiligo today, he becomes serious and makes a short pause. He is gathering his thoughts. This question is clearly important. He has made the transformation himself, and he wants to make sure that there is a helping hand for people walking down the same road. “I would say: How are you doing? I understand what you are going through. You are not alone. You will not only live through vitiligo, but you will also thrive in it. It will be a part of who you are, but it will not be everything you are. Don’t isolate yourself, go on living your life, don’t make it something that changes your personality.” The oxymoron is, however, that while you work on not losing yourself, you tend to come out wiser and stronger at the other end. Anecdotes of how Lee Thomas’ work has helped vitiligo patients over transformative barriers is the reward that keeps him going.

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