How the vitiligo world has changed

Last Updated on 14th March 2025 by Caroline Haye

We’ve come a long way and there’s more to look forward to

My vitiligo journey spans 6 decades, and counting. (Hard to believe – but yes, I really am that old.) Seen in the rear view mirror, it’s staggering how our world has altered in sixty years. In many ways, it is virtually unrecognisable. Technology has accelerated at the speed of light, taking us from a low-tech way of life to a data-driven digital one. One where the internet, AI, VR, drones and driverless cars are concepts as familiar to us as slide rules, typewriters, transistor radios and landline telephones were back then.

There have also been unimaginable innovations in medicine. But, when I reflect on how the vitiligo world has changed in that same time frame, it is clear that it has not kept pace. In fact, any significant progress towards better vitiligo awareness, support, research and treatments has been relatively recent. Yet we have come a long way since the “dark ages” of the 1960s when I received my vitiligo diagnosis. You might even say that a virtual scientific and social vitiligo revolution has been taking place since the turn of the millennium. And I truly believe that we have a lot more to look forward to with each passing year.

Vitiligo awareness

THEN – When I was small you would have been lucky to find one person in ten thousand who had even heard of vitiligo. During my childhood and adolescence I never once set eyes on anyone else with visible pigment loss. Not that vitiligo was necessarily less common back then. But because people (myself included) hid the condition. Unlike more common skin complaints, it was as if vitiligo was a shameful secret. Near universal ignorance of the disorder meant that you might as well have walked around with two heads as bare your white patches in public. To do so would most likely have met with shock, pity, unwelcome curiosity or even revulsion.

For many people of that era the sight of pale skin lesions would have brought to mind associations with leprosy. (Along with the dread that surrounded that stigmatised affliction.) Even doctors seemed to have very sketchy knowledge of vitiligo back then. And almost no appreciation of its emotional and social impact on sufferers. As a result of this widespread ignorance and secrecy, people with vitiligo typically experienced feelings of isolation and helplessness. I know I did.

NOW – The internet has been a total game changer for vitiligo awareness. Global connectivity has given sufferers visibility and a strong voice. It has opened up a world of information and education that I could never have imagined when I was younger. Starting with Michael Jackson, people everywhere began to become familiar with the word “vitiligo” and to have some idea what it meant. World Vitiligo Day, vitiligo support groups, vitiligo advocates, vitiligo forums and groups on social media are some of the many positive developments that followed… Progress that would not have been possible without the internet. And this increase in awareness of what vitiligo is, and what it isn’t, has even made its way into mainstream advertising. (Surely, one of the most influential ways imaginable to bring any concept into mainstream consciousness.)

Vitiligo support

THEN – I think it is fair to say that support groups weren’t really a thing back in the mid twentieth century. Anyone contending with practical or psychological issues would have been reliant on supportive friends and family to help them through… Or else left to cope alone. And, with no internet – or even any helpful print publications – to consult, living with vitiligo often felt like a lonely struggle with a sinister and malevolent enemy.

Support from doctors was also conspicuous by its absence. I never saw any references to vitiligo in any GP’s surgery I visited. Nor even in any dermatology waiting room. Medical treatments were almost non-existent. And no talking therapies or other kinds of psychological interventions were ever offered. In short, vitiligo was regarded as an obscure and harmless skin disorder. Mainstream health professionals gave it short shrift in most cases. So patients had to come to terms with their condition as best they could without help of any sort.

NOW – As I outlined in the previous section, the internet has given birth to a virtual vitiligo community that reaches across the globe, meaning that sufferers no longer need to feel completely isolated or uninformed. Charities and support groups now exist internationally and locally. And there are numerous ways online to connect with others who are willing to share their vitiligo experiences, tips and friendship. Not only that, but anyone affected by the condition now has easy access to a huge amount of factual information on the subject. And the medical profession has become a lot more supportive of vitiligo patients than they ever were in the past.

Vitiligo research

THEN – The earliest recorded vitiligo studies date back to the mid nineteenth century. (Unless you count various accounts found in ancient Egyptian, Indian and Hebrew texts). But by today’s standards these shed very little light on the condition. In fact, according to my online searches, significant modern research really only began to appear around the turn of the twenty-first century. So you could say that vitiligo came rather late to the dermatology party.

NOW – The last couple of decades have seen the fastest progress, presumably because the growth of vitiligo awareness has resulted in greater interest in this field of research. It has finally started to attract the kind of funding that is needed and a veritable race to find the best treatment options possible is now well and truly on.

Because vitiligo is a complex condition involving multiple pathways in the body, different researchers are approaching the challenge from a variety of angles. In other words, different drugs under development aim to interrupt the vitiligo process at different stages, using a variety of mechanisms… A fact that I think makes this race especially interesting… Because it is anyone’s guess which approach will result in the most effective treatments.

The first drug across the finish line was a JAK inhibitor called Ruxolitinib (Opzelura), a type of disease-modifying anti-rheumatic medication. (Although it might be more appropriate to say that this is now at the start line of a new race, since it is far from perfect and will probably need further research to improve its effectiveness and safety.)

Other categories of drugs are at various stages of development and will almost certainly be as imperfect as Opzelura when they first go to market. But I suppose that is the nature of medical research. And it all represents huge strides forward. But, of all the current vitiligo research I am aware of, Caroline Le Poole’s work on the microbiome strikes me as the most exciting. This is because it seems to offer greater hope than any other approach of a safe, natural and permanent vitiligo cure.

Vitiligo treatments

THEN – When I was a child, doctors were not in the habit of prescribing any kind of treatment for vitiligo. Mainly because there weren’t really any for them to prescribe. It was very much a case of “It won’t kill you, so don’t worry about it. Go home and live with it”. And, when I was older, the only therapy my GP eventually offered (rather grudgingly, I seem to remember) was PUVA. He told me that he didn’t really expect it to help. And, sure enough, it didn’t. So that was the end of that.

NOW – There is still no actual cure for vitiligo and no one-size-fits-all treatment for doctors to prescribe. But there is, at least, a range of options that a vitiligo patient today can potentially access. These include topical corticosteroids that can calm the inflammation involved in the vitiligo process. Also, topical calcineurin inhibitors, like tacrolimus (Protopic) and pimecrolimus (Elidel), which can help reduce the damage done to melanocytes by suppressing the immune system. Phototherapy is also a tried and tested option that is often even more effective when used in combination with other treatments.

In addition, there are some surgical and cosmetic procedures that can improve the appearance of vitiligo, not to mention traditional remedies, including nutritional, herbal and holistic healing therapies. (My own unexpected success with nutritional supplements being one example.) More exciting still, I suspect, will be the options we can look forward to in the future

The vitiligo world of the future

It is hard not to be optimistic when you consider the pace of recent progress in the vitiligo world. After all, it took several millennia for humankind to even start talking about the condition. And yet it has taken a mere couple of decades to achieve so much in terms of awareness, support, research and treatment. There is obviously still a long way to go before everyone who wants a total cure can have one. (Or, for that matter, before everyone who does not want a cure feels completely at ease in their own skin.) But if recent developments are anything to go by, I am optimistic that they will accelerate with every passing year. So, all in all, I think it is fair to say that there has never been a better time to have vitiligo than now. And things can only get better. 🙂