This year, World Vitiligo Day 2025 will be celebrating its 15th anniversary at an AI-focused summit in Toronto, Canada. The theme is ‘Innovation for Every Skin’ where it will look at leveraging artificial intelligence to transform vitiligo diagnosis, treatment and patient care.

Vitiligo is a condition that is more than skin deep. The more common of the two types, non-segmental vitiligo is a progressive auto-immune condition. Yet vitiligo remains overlooked as a health condition because the pale white patches that develop on the skin may not be physically painful, itchy at worst, but the emotional impact for sufferers is enormous.

The condition is believed to affect economic status and mental health to half of those affected. In many societies, particularly across Asia and Africa, vitiligo carries social stigma, leading to self-isolation and suicidal thoughts.

At LDA Research we often come across invisible illnesses, where patients are told how well they look, and it’s assumed they can’t be suffering. Vitiligo is all about visibility and still is not often discussed or understood. It really is time for vitiligo to be heard as well as seen.

Vitiligo affects 100 million people worldwide. It is caused by the lack of pigment called melanin in the skin. Melanin is produced by skin cells called melanocytes, which give skin its colour. In vitiligo there are not enough working melanocytes to produce enough melanin in your skin. This causes white patches to develop on your skin or hair. While it can affect any area of skin, it commonly happens on the face, neck and hands, and in skin creases.

There are two main types of vitiligo: non-segmental vitiligo and segmental vitiligo. Non-segmental vitiligo (also called bilateral or generalised vitiligo) is most common where symptoms often appear on both sides of your body as symmetrical white patches. This type of vitiligo is thought to be an auto-immune condition. In auto-immune conditions, the immune system does not work properly, instead of attacking foreign cells, it attacks your body’s healthy cells and tissue. If you have non-segmental vitiligo, it destroys the melanocyte skin cells that make melanin. With its significant genetic links, vitiligo is also associated with other auto-immune conditions, such as hyperthyroidism (an overactive thyroid gland). In rare cases it can impair vision, hearing and other vital organs.

In segmental vitiligo (also known as unilateral or localised vitiligo), the white patches only affect one area of your body. This is less common, although it’s more common in children.

Treatment for vitiligo is based on changing the appearance of the skin by restoring its colour. There is no complete cure. However, for some people treatment is not permanent, and it cannot always control the spread of the condition. The white patches caused by vitiligo are usually permanent, although treatment options are available to reduce their appearance.

Options include using skin camouflage cream to cover small patches of the skin; steroid creams can restore some pigment to the skin, but are not advised for long term use, as they can cause stretch marks and thinning of the skin. Phototherapy (treatment with light) may restore colour to the skin, but the effect does not usually last, and surgical interventions. Treatment cannot stop the condition spreading.

LDA Research have recently conducted a study on the patient treatment experience with dermatological conditions such as non-segmental vitiligo and JAK inhibitors, which play a role in the immune system’s response to inflammation.

A brief look at the history of how WVD Day began is a testament to the community’s perseverance, unity, and the transformative power of grassroots advocacy. It is against the backdrop of physical, emotional, and social challenges that WVD became a beacon of hope in a landscape often shrouded in misunderstanding and neglect.

In 2009 vitiligo was 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, largely ignored by insurance companies, making it an unattractive prospect for Big Pharma or academics. Treatments were limited to off-label options, borrowed from other conditions with limited success.

Awareness for vitiligo and WVD began in India, then the US formed groups, and when Ogo Maduewesi organised a Vitiligo Purple Fun Day at a shopping mall in Lagos, Nigeria on June 25, 2011 as a tribute to Michael Jackson’s battle with vitiligo, the movement went global.

Michael Jakson initially concealed his vitiligo with his iconic white glove around the time of his album Thriller, and chose to depigment his remaining dark patches as the vitiligo rapidly spread. Despite openly discussing his condition on the Oprah Winfrey Show in 1993, he continued to face accusations of deliberately bleaching his skin to look whiter, and it wasn’t until after his death in 2010 that his vitiligo diagnosis was formally confirmed on his death certificate.
Ogo wanted to honour Jackson’s struggle and confront the stigma associated with vitiligo in Africa, where it was often misunderstood as a ‘divine curse’.

Former Sierra Leonean-American ballet dancer Michaela Mabinty DePrince was born with vitiligo in Kenema 1995. Vitiligo was considered a curse in her culture and her father believed she would never marry because of it.

He was killed by rebels during the civil war in Sierra Leone, and her mother died of starvation shortly after. Her uncle said, ‘You are a useless child! Look at you. How ugly you are. You have the spots of a leopard. I am wasting food and money on you. I will not even get a bride-price in return. Who would want to marry a girl who looks like a dangerous beast of the jungle?’ He left Michaela to the mercy of the orphanage system, where she faced relentless discrimination due to her vitiligo. Her nickname in the orphanage was devil’s child. When her orphanage was bombed, she fled to a refugee camp where she was later adopted by the American DePrince family.

Michaela chronicled her story in her memoir: ‘Taking Flight: From War Orphan to Star Ballerina’, co-written by her adoptive mother Elaine DePrince. She promoted humanitarian causes such as War Child, as well as dancing with the Boston Ballet, the Dance Theatre of Harlem and the Dutch National Ballet until her death at the age of 29 in 2024. Michaela was part of a growing number of young people who weren’t afraid to show their skin condition.

Canadian activist and model Winnie Harlow used her platform to promote body positivity and self acceptance. She partnered with The Sims 4 to enable players to create characters with vitiligo. Then members of the Instagram community created a filter to hide the condition followed by filters created to make people look like they have vitiligo! VITFriends Vitiligo Support Group on Facebook hit back by saying ‘Vitiligo is NOT a trend! There are MILLIONS of people who are truly SUFFERING from vitiligo. We have gotten many messages over the years of people contemplating suicide because of their skin. This isn’t a joke, this is real life.’

Anasilvia Salazar, from Guatemala now living in the US, described her vitiligo as, ‘Undervalued by doctors, misunderstood by science, and judged by society.’ When she was diagnosed her doctor said, ‘Relax, this is not going to kill you. It doesn’t hurt, it doesn’t sting, it’s just colour loss’, but she described how the emotional and psychological burden that vitiligo brings with it is immense. People with this condition are more likely to have high levels of anxiety and very low self-esteem and are affected by it in all areas of their life. So while vitiligo might not kill you on the outside, it can kill you inside.’

She tried the latest medical advances for repigmentation with little success. So Anasilvia decided to start working on healing her wounds and loving her vitiligo. ‘I picked up some of my passions, like photography, which has helped me heal. I took this photograph as part of my acceptance process. I called it Embracing My Canvas. It’s a black and white self portrait that captures the beauty of vitiligo. Each patch tells stories of resilience, self-love, and the healing power of art on my journey towards acceptance.’

The Vitiligo Research Foundation (VRF) was founded in New York by philanthropist Dmitry Aksenov, who funded research in the hope of finding a cure for his daughter’s condition. Professor Yan Valle, CEO wanted a unifying campaign that would bring young scientists into the relatively unexplored field of vitiligo, but also to bring the community worldwide together.

The VRF organised a Winter Consensus Conference in Austria, bringing three Nobel Laureates and 200 other leading scientists to: focus attention on the overlooked vitiligo, engage Big Pharma executives in brainstorming for vitiligo drugs, and to orchestrate WVD 2013 activities. It was a bold attempt to bridge the gap between scientific research, pharmaceutical innovation and community advocacy.

From this point, WVD embarked on a global odyssey. Each year, a new country would take centre stage as the campaign’s headquarters, spreading awareness and fostering international collaboration. In 2022 they had a breakthrough with the US FDA’s approval of the first topical vitiligo treatment, followed by the European Medicines Agency (EMA).

Professor Yan Valle has produced an online AI-Powered Vitiligo Guide: Simplifying Skin Health which offers insights into vitiligo research, treatments, nutrition, and mental health. Available in more than 50 languages to ensure global accessibility, it can simplify complex topics for children or provide detailed explanations for experts, and users can interact via text queries for quick answers, engage in audio conversations and video chats will soon be available.

The VR Foundation’s non-profit mission offers subscriptions providing free access enabling users to ask up to 25 questions daily and unlimited access for $3 monthly subscription. They state that while this tool provides valuable knowledge it is not a substitute for professional medical advice.

Skinopathy and the VR Foundation are working together to give free advanced digital health tools, that provide personalized AI care, real-time tracking, and expert guidance, all from their smart device.

The idea is that if you upload a picture of your vitiligo they can help measure its progress, connect you to a doctor, and provide supportive skincare. The doctors like the fact that once they receive the AI analysis, they automatically have the medical history to recommend the best treatment options.

As well as monitoring the patient’s skin condition with colorimetric assessments and objective spatial measurements, detecting new vitiligo onset or relapse, looking at lesion characteristics and success of treatments over time, it also provides early access to the latest news, clinical trial and products.

WVD will be livestreamed on June 25 to reach an international audience. Academics and researchers will showcase their work, and share their vison of a future of understanding, management and potential cure. LDA Research will report back following this event.

‘You never really understand a person until you consider things from his point of view . . . Until you climb inside of his skin and walk around in it.’ Atticus Finch in To Kill A Mockingbird by Harper Lee.

AI-Guide on Vitiligo by Prof. Yan Valle, CEO VR Foundation
https://skinopathy.com/vitiligo/