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This is the extraordinary story of World Vitiligo Day (WVD) celebrated annually on June 25 - a testament to perseverance, unity, and the transformative power of grassroots advocacy.
WHAT VITILIGO IS: More Than Skin Deep
Before we delve into the WVD journey, let's understand the condition at its heart. Vitiligo is not merely a cosmetic issue; it's a progressive autoimmune disease that paints white patches on the skin's canvas. In rare cases, it even impairs vision, hearing and other vital organs. This condition, with its significant genetic links, often walks hand in hand with other autoimmune diseases.
Vitiligo is an equal opportunity condition, affecting about 0.5-2% of people worldwide, regardless of sex, age and social status. However, it shows a curious pattern, with onset peaks around ages 24 and 50. While treatments exist - from medications to UVB phototherapy and surgical interventions - they offer limited relief without a complete cure. In fact, for about 40% of cases, the ghostly white patches reappear within 3-5 years post-treatment, like unwelcome guests returning to haunt the skin.
But the true impact of vitiligo goes far beyond the visible. It casts a long shadow on economic status and mental health, with over half of those affected showing clinical signs of psychological distress. Anxiety disorders and depression become unwanted companions for 30% and 25% of patients, respectively. In many societies, particularly across Asia and Africa, vitiligo carries a heavy burden of social stigma, pushing individuals towards the precipice of suicidal thoughts and self-isolation.
It is against this backdrop of physical, emotional, and social challenges that the story of World Vitiligo Day unfolds - a beacon of hope in a landscape often shrouded in misunderstanding and neglect.
THE GENESIS: From Humble Beginnings to Global Recognition
The story of WVD begins in 2009, a year marked by global economic recession, the rise of Bitcoin, and the release of "Avatar." In this tumultuous time, vitiligo remained a poorly understood skin condition, caught in a no-man's land of medical priorities. Neither a 'blockbuster' nor an 'orphan' disease in medical terms, it was largely ignored by insurance companies, making it an unattractive prospect for Big Pharma or academia. Treatments were limited to "off-label" options, borrowed from other conditions with limited success. It was in this challenging landscape that a movement for vitiligo awareness began to take root.
The prologue to World Vitiligo Day was penned in India, where Prof. Savita Malhotra of PGIMER, Chandigarh, planted the seeds of change. A National "Vitiligo Day" blossomed annually on May 19th until early 2015, when the indefatigable Prof. Davinder Parsad united all three Indian dermatological societies to embrace a global celebration on June 25.
Across the globe, in the United States, parallel efforts were sprouting. Steve Hargadon, founder of the online community Vitiligo Friends, and Valarie Molyneaux, president of the Boston-based support group VITFriends, were independently advocating for a similar day of observance. Their efforts were complemented by Barbara Summers' persistent campaign in Delaware, which led to Governor Markell proclaiming July as Vitiligo Awareness Month. However, their voices, though passionate, were muffled by the cacophony of a world in crisis, with every group focused on mere survival.
The true catalyst for change emerged from an unexpected quarter. In Lagos, Nigeria, Ogo Maduewesi, founder of the Vitiligo Support and Awareness Foundation (VITSAF), organized a 'Vitiligo Purple Fun Day' at the Silverbird shopping mall on June 25, 2011. This event, a tribute to Michael Jackson's battle with vitiligo, would become the spark that ignited a global movement.
Michael Jackson, the King of Pop, was perhaps the most famous person to have lived with vitiligo. His journey with the condition began in the early 1980s, coinciding with the release “Thriller," the best-selling album of all time. Initially concealing it with his iconic white glove, Jackson later chose to depigment his remaining dark patches as the vitiligo spread rapidly. Despite openly discussing his condition on the Oprah Winfrey Show in 1993, he continued to face accusations of deliberately bleaching his skin. It wasn't until after his untimely passing in 2010 that his vitiligo diagnosis was formally confirmed, adding a poignant footnote to his complex legacy.
Ogo's initiative aimed to honor Jackson's struggle and confront the stigma associated with vitiligo in Africa, where it was often misunderstood as a "divine curse." Her online petition for a global vitiligo awareness day initially gathered a mere 1,000 signatures, but it was enough to spark a global awakening within the vitiligo community.
However, Ogo's dream faced formidable obstacles. Nigeria's reputation in the early 2010s as a hub for online scams threatened to overshadow the legitimacy of her cause. As she desperately sought leverage and collaboration, Ogo remained steadfast in one condition: the global day must fall on June 25th, in memory of the King of Pop. This decision, while honoring Jackson's legacy, would later prove to be a double-edged sword in the campaign's journey.
GAINING MOMENTUM: A Global Change
The faint spark ignited in Nigeria soon caught the attention of Yan Valle, CEO of the Vitiligo Research Foundation (VRF) in New York. The VRF, founded by philanthropist Dmitry Aksenov, had been quietly funding vitiligo research for years, driven by a father's quest to find a cure for his daughter's condition. In a landscape where vitiligo was just one of many 'overlooked' health conditions, Valle saw an opportunity to orchestrate a global change.
Valle envisioned a unifying campaign that would not only draw young scientists into the relatively unexplored field of vitiligo research but also harmonize the fragmented voices of the vitiligo community worldwide. This was no small feat in a field devoid of quick acclaim or substantial rewards, where career advancement opportunities were as scarce as effective treatments. Recognizing the potential in Ogo's grassroots effort, VRF set out to compose a symphony of change, with finding a cure for vitiligo as its central melody.
The official inauguration of World Vitiligo Day on June 23, 2012, was a humble overture. Organized by Prof. Torello Lotti and Yan Valle at the Aula Magna of the University of Guglielmo Marconi in Rome, the press conference faced an unexpected challenge - a citywide transport union strike that paralyzed the Eternal City. Yet, like a phoenix rising from the ashes, the campaign announcement resonated far beyond Rome's ancient walls. Pre-arranged activism events in Africa, the EU, and the USA on June 25th exceeded all expectations, demonstrating how small, concerted efforts could cause a societal impact akin to a tsunami.
The movement's momentum continued to build. In December, a Winter Consensus Conference organised by VRF in the picturesque town of Kitzbühel, Austria, brought together three Nobel Laureates and 200 other leading scientists. This gathering had three ambitious objectives: to focus academic attention on the overlooked realm of vitiligo research, to engage Big Pharma executives in brainstorming for vitiligo drugs, and to orchestrate WVD 2013 campaign activities. It was a bold attempt to bridge the gap between scientific research, pharmaceutical innovation, and community advocacy.
From this point, World Vitiligo Day embarked on a global odyssey. Each year, a new country would take center stage as the campaign's headquarters, spreading awareness and fostering international collaboration like never before.
PETITIONS: The Power of Collective Voices
As the WVD movement gained traction, the VRF set an audacious goal: to collect at least 500,000 signatures for a petition seeking official recognition from the United Nations (UN). This wasn't merely about numbers; it was a strategy to catapult vitiligo onto the global stage, encouraging governments to tap into UN and World Health Organization (WHO) resources to boost research. The campaign drew inspiration from the World Psoriasis Day (WPD) movement, which had successfully achieved WHO recognition in 2014 after a decade of tireless advocacy.
The petition effort began modestly. Ogo Maduewesi's initial campaign on the popular website Petitions24 ultimately gathered 1,400 signatures before stalling. However, the tide turned when the VRF launched and promoted the dedicated campaign website, 25June.org, featuring a petition for UN recognition.
What happened next was nothing short of extraordinary. Michael Jackson's fans, moved by the cause, became unexpected allies in the fight against vitiligo stigma. They rallied together, amassing nearly 270,000 signatures in less than a year. Comments like "Heal the World" and "Let's do this for Michael" flooded in, infusing the campaign with the spirit of the late pop icon's message of unity and change.
Support from Michael Jackson's fans brought mixed reactions within the vitiligo community. Concerned about the campaign's focus, some groups launched a separate initiative for "National Vitiligo Awareness Day" in the US on October 17th. This effort persisted at least until 2023, with legislators reintroducing a resolution for the date. Despite its alignment with National Bullying Month, this initiative struggled to match the global momentum of World Vitiligo Day on June 25th, which had already established a strong international presence.
By the close of 2013, the WVD petition had garnered over 475,000 signatures, surpassing the target mark of 500,000 by July, 2015. Armed with this groundswell of support, the VRF sought and obtained United Nations Economic and Social Council (UN ECOSOC) Special Consultative Status. This prestigious position allowed for direct advocacy of WVD's recognition to the UN committee.
The efforts bore fruit when WVD was included in the 'UN Calendar of Disability Events' in late 2016. However, the journey was far from over. In 2019, a refocus of the calendar to only 'Major Events' saw WVD's status change. Plans to reinstate WVD's position on the UN calendar were then derailed by the unforeseen global disruptions of the early 2020s, including the COVID-19 pandemic.
GLOBAL ARENA: A Symphony of Collaboration
World Vitiligo Day's unique approach sets it apart from traditional "health days." Like a well-orchestrated symphony, WVD adopts a network-centric management model, fostering harmony through the collaboration of agile, independent teams. This innovative strategy has given birth to a diverse array of initiatives, from intimate backyard gatherings for parents to expansive three-day conferences for healthcare professionals.
Since its inception, WVD has embarked on a global journey, with the international campaign's headquarters migrating to a new country each year. At the national level, the movement adapts to local customs: in the USA and France, events dance between states or cities annually, while in China and India, they maintain a steady rhythm in familiar locations.
A DECADE OF MILESTONES
The WVD story is punctuated by remarkable moments that have shaped its journey:
- 2012: The curtain rose in Rome, Italy with Profs. Lotti and Valle's official launch, while across the Atlantic, the Delaware vitiligo support group secured a proclamation of July as a Vitiligo Awareness Month.
- 2013: The campaign under Prof. Henry Lim honorary leadership jumped the Atlantic, and found its voice on American airwaves as Lee Thomas, the 3x Emmy award nominee, graced Fox 2 TV in Detroit, USA.
- 2014: A WVD event in Chandigarh, India, led by Prof. Davinder Parsad, drew over 800 physicians and opened doors of 50 clinics for free consultations, plus a day-long parade enlivened the busy city streets.
- 2015: The movement's pulse quickened as activists in Shenyang, China and New York gathered over 20,000 petitions in a single day, reaching our goal of 500,000 petitions. Indian dermatologists adjusted date of the National Vitiligo Day. Two US Governors proclaimed June as Vitiligo Awareness Month.
- 2016: Valarie Molyneaux and VITFriends’ army of supporters marched on Capitol Hill in Washington, DC. Governors of 18 US states issued proclamations in support of WVD, which finally marked the UN Calendar in July.
- 2017: Prof. Paulo Cunha embraced the wisdom of rainforest tribes in Brazil, channeling it towards revitalizing research into potential natural remedies for vitiligo. US community gathered in Detroit.
- 2018: Prof. John Harris and VITFriends debuted a three-day marathon of knowledge at Nobel-prize winning university just outside of Boston, USA, setting a standard for future gatherings.
- 2019: The Vietnamese government, under the aegis of Prof. Nguyen Van Thuong in Hanoi, acknowledged the WVD effort at the national level for the first time.
- 2020: The pandemic year disrupted the event in Serbia, under Prof. Ivana Binic leadership. Prof. Xinghua Gao conducted a virtual conference in China, establishing a new campaign record with 5.5 million viewers.
- 2021: Dr. Srie Prihianti Gondokaryono and her mighty Indonesian team performed across every social media stage imaginable amidst continued COVID-19 restrictions.
- 2022: Mexico's Senate chambers resonated with WVD's message, led by Prof. Jorge Ocampo Candiani, while Morgan Freeman's voice carried the cause to a multi-million audience, and governors of 18 US States declared June as "Vitiligo Awareness Month.”
- 2023: Dr. Aliya Kasymkhanova led a three-day festival across 11 Kazakh cities, as VIPOC members knocked on the European Parliament's doors and VITFriends lit over 50 monuments all over USA with purple.
- 2024: WVD's rocked Cali, Colombia, under Dr. Claudia Arenas' leadership, while in Toronto, the first AI-driven dermatology platform for vitiligo took its inaugural bow.
Regional support groups like VITFriends in the USA, VIPOC members in the EU, the Vitiligo Society in the UK, and SHWETA in India have amplified WVD's reach, effectively influencing policies and perceptions over the years.
Against all odds, WVD has emerged as a mighty force in global health advocacy, its impact resonating louder than similar events according to ever-watchful Google Trends.
FROM SHADOWS TO SPOTLIGHT: A Pharmaceutical Revolution
Beyond seeking UN recognition, WVD quietly aimed to illuminate vitiligo within the pharmaceutical industry. This strategy has orchestrated a remarkable transformation, its notes rippling through society's perceptions, media coverage, scientific research, and startups, before finally reaching the ears of healthcare and legislative bodies.
The once-barren landscape of vitiligo drug development has blossomed into a garden of innovation. From a solitary company in 2010, over 40 now cultivate hope for those with vitiligo. July 2022 marked a breakthrough with the US FDA's approval of the first topical vitiligo treatment, with the European Medicines Agency (EMA) soon joining the trend.
World Vitiligo Day has grown from a whisper to a resounding anthem, amplifying the voices of 100 million people affected by vitiligo and envisioning a future of understanding, management, and potential cure.
World Vitiligo Day Capitals
- 2024: 🇨🇴 Cali, Colombia
- 2023: 🇰🇿 Almaty, Kazakhstan
- 2022: 🇲🇽 Mexico City, Mexico
- 2021: 🇮🇩 Jakarta, Indonesia
- 2020: 🇷🇸 Zagreb, Serbia
- 2019: 🇻🇳 Hanoi, Vietnam
- 2018: 🇺🇸 Boston, USA
- 2017: 🇧🇷 Sao Paulo, Brazil
- 2016: 🇨🇿 Prague, the Czech Republic
- 2015: 🇨🇳 Shenyang, China
- 2014: 🇮🇳 Chandigarh, India
- 2013: 🇺🇸 Detroit, USA
- 2012: 🇮🇹 Rome, Italy
- 2011: 🇳🇬 Lagos, Nigeria
World Vitiligo Day Themes
- 2024: United by the Skin
- 2023: Vitiligo: Looking into the Future
- 2022: Learning To Live With Vitiligo
- 2021: Embracing Life With Vitiligo
- 2020: SELF: Awareness, Love, Respect, Care
- 2019: The Quality of Life of Vitiligo Patients
- 2018: Children, Research, and Hope for the Future
- 2017: Step Up for Vitiligo: A Call for Truth, Hope and Change!
- 2014: Holistic Management For Vitiligo
World Vitiligo Day Presidential Committee
- Dr. Claudia Arenas (Colombia)
- Dr. Aliya Kassumkhanova (Kazakhstan)
- Dr. Jorge Ocampo Candiani (Mexico)
- Dr. Srie Prihian Gondokaryono Indonesia)
- Dr. Ivana Binić (Serbia)
- Dr. Nguyen Van Thuong (Vietnam)
- Dr. Paulo Cunha (Brazil)
- Dr. Jana Hercogova (Czech Republic)
- Dr. Xing-Hua Gao (China)
- Dr. Davinder Parsad (India)
- Dr. Henri Lim (USA)
- Dr. Torello Lotti (Italy)
- Ogo Maduewesi (Nigeria)
- Yan Valle (Canada)
Led by the WVD Presidential Committee, this global movement orchestrates diverse events worldwide, with healthcare providers offering free services and media attention swelling across all platforms. This symphony of change, honoring countless unsung heroes, has illuminated a path of hope, transforming lives and perceptions of vitiligo. As it continues, World Vitiligo Day stands as a powerful testament to unity, perseverance, and hope.
NB: This narrative remains a dynamic work in progress. As the campaign continues its global journey, it evolves constantly, adapting to shifting societal perceptions and addressing the evolving needs of the vitiligo community.
We've distilled our collective knowledge and memories into this framework, striving for both simplicity and elegance. It's akin to fitting an elephant into a Mini Cooper - some details may have been condensed or trimmed for the sake of coherence.
Consider this account a 'wireframe prototype' - a foundation upon which anyone can build and expand. Whether your ultimate goal is a comprehensive Wikipedia entry, an engaging interactive presentation, or even a cutting-edge AI-powered book, this serves a starting point for the entire community.
If you believe we've overlooked a crucial event or perspective, or if you simply wish to share your personal experiences, we welcome your input. Please reach out to us at info@vrfoundation.org. Together, let's continue shaping this remarkable story.
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