Real help for vitiligo sufferers: 4 reasons to raise your hopes

Last Updated on 11th February 2022 by Caroline Haye

Reasons to be optimistic

Since you are reading this page it’s probably safe to assume that you are looking for help with your vitiligo… Or for information on behalf of a loved one. You are certainly not alone in your quest. At times, it can be a frustrating, confusing and disheartening one too. But I hope that, by the time you have read this post, you will feel reassured that you can look forward to real help for vitiligo sufferers in the near future.

For more than a decade now I have waded through mountains of vitiligo information. I have scoured search results, websites, research papers and expert articles. All in an attempt to find out as much as possible on the subject. Initially, all I was looking for was possible remedies for the mysterious disease that had plagued me since early childhood. The condition eventually robbed me of most of my skin colour. Not just that, but it also stole a great deal of my self-confidence and peace of mind.

Later, once I recovered almost completely from my very extensive pigment loss, I shifted my focus away from looking for effective treatments. And I shifted to gaining a better understanding of what causes vitiligo in the first place. I wanted to understand why the nutritional therapy that I used achieved such good results… And what other treatments might also be effective in fighting vitiligo.

By this time I had begun my blog to share my own success story as well as posting feedback from others who had reported varying degrees of repigmention too. The process of creating a website and writing my blog was cathartic in itself. I had spent most of my life hiding my vitiligo… Trying my hardest not to think about it any more than necessary. But, finally, I had a wonderful reason to “come out” and shout about my recovery from the rooftops.

My main reason for creating The Vit Pro

But the main reason for creating The Vit Pro was to get my message out to others. This message was that if I, with 80% loss of pigment over 5 decades, can recover almost completely, then there is hope for everyone. I wanted to correct the universally accepted view of vitiligo as incurable and therefore not worth treating. My goal was to let others know that they do not have to accept their doctor’s opinion that vitiligo cannot be reversed or managed effectively. And I wanted to say “I am living proof that you do not have to just accept your loss of skin colour if you don’t want to.”

In the course of building this site, keeping abreast of the latest vitiligo news has become a passion. Not just a passion, but a source of fascination. And I have been doing it for long enough to know that advances in vitiligo research and general awareness are finally moving at a genuinely exciting pace. So much so that I predict the next few years will bring with some significant improvements… Improvements in the support, treatments and options available to people with vitiligo. And I anticipate that these will prepare the way for a possible cure in the early 2020s. But, to fully appreciate how things have already changed for the better, it is worth a brief look back at the past.

The definition of vitiligo used to be 11 words

During the first few years of my internet research reliable sources were hard to find. This was partly because not many people were using the web at that time to share information on such an “obscure” skin condition. (The exception being a very limited number of academics and researchers.) And partly because there really was woefully little to share back then anyway. You could sum it up in 11 words. And this was pretty much what every doctor would tell their patients:

“vitiligo is an incurable but harmless skin disease of unknown origin”

This unhelpful, disheartening and less than accurate opinion was commonplace – and, sad to say, it still is to this day. The net effect of this situation was to make many of us feel panic-stricken, alone, hopeless and utterly depressed.

But here are four compelling reasons to be optimistic about the future…

1. Online vitiligo resources are growing in number and quality

I am happy to say that the availability of information online has mushroomed since those days. Of course, this could be either a good or a bad thing, depending on how you look at it. Some people would say that the internet has enabled phoney practitioners and unscrupulous sellers of fake remedies to exploit those desperate for a cure. And this is true. But I believe that most of us with first-hand experience of vitiligo can spot these websites a mile off. Their unprofessional content and unrealistic claims are very clearly bogus. And, happily, sites like this are becoming increasingly few. (At least, in comparison to to the growing number of genuine online vitiligo resources.)

Personally, I see the growth in vitiligo-related websites as a tremendously positive trend. I say this because it is empowering people to take charge of their vitiligo by learning, sharing and supporting each other instead of remaining isolated, helpless, passive “sufferers” which is how I used to feel.

2. The power of social media and celebrity involvement

When my vitiligo was first diagnosed my perception was that my doctor knew next to nothing about the condition and didn’t consider it even worth worrying about since it was not going to kill me. Throughout the following 4 decades I never met anyone else with vitiligo and never heard anyone discuss it. I hid mine and I can only suppose everyone else who had it was busy hiding theirs too. No treatment that any doctor offered (not that there were many) was expected to work and indeed none of them did. As far as I was concerned, I had been singled out by fate to suffer in secret with an unknown disease that no one had any interest in curing. I am sure I am not the only one to have felt this way.

But social media has enabled us all to share our experiences of living with vitiligo. And it has shown us that even some of our celebrity idols are not immune from the condition. The revelation that Michael Jackson’s controversial skin bleaching was, in fact, because he had vitiligo was seminal in raising the profile of this previously under-recognised and misunderstood skin condition.

3. The rise of vitiligo awareness

The subsequent creation of campaigns like World Vitiligo Day, and the emergence of vitiligo support groups and advocates and role models like Winnie Harlow and Lee Thomas, have helped everyone living with vitiligo to realise they are not alone. I am not generally a huge fan of today’s celebrity culture. But in this particular context I think that knowing a lot of famous people have skin diseases too is really helpful in boosting the morale of other sufferers. And it also helps to tackle ignorance and raise public awareness of the need to find effective cures.

As well as facilitating this surge in social awareness, the internet has enabled us all to browse past and present research… Meaning that we all have the opportunity to be much better informed than ever before. In fact, I am sure that there are many vitiligo sufferers out there whose internet research has given them a greater and more up-to-date understanding of the condition than most family doctors. (And even some dermatologists.)

4. Vitiligo research is progressing and is more accessible

Years ago I could never have imagined there would come a time when so much money would be spent on vitiligo research. I could not have guessed that clinical trials into promising treatments would be well underway and researchers and clinicians would be having a meaningful dialogue with patients, keeping them abreast of progress and involving them in the process. Yet that is exactly what is happening today.

These advances have been happening gradually in the background for a few years now. And they are possibly best exemplified in the work of Dr John Harris, whose experience as both a researcher and practitioner has enabled him to build rapport and mutual understanding between those suffering from vitiligo and those seeking to treat it. This new accessibility of medical science to the vitiligo community has been a growing trend over the last couple of years. And it is continuing to gain pace with the help of vitiligo charities, support groups and guest blogs that encourage conversations and sharing of information.

These 2 communities need to get with the programme

I predict that all of the positive trends I have describe above will continue to gain momentum in the coming months. But it would be wrong to suggest we should all congratulate ourselves on a job well done and sit back and wait for the imminent announcement of a permanent cure for vitiligo. While researchers continue to do their work and we continue, in the meantime, to take control of our own attitudes and therapies, there is still a lot more we need to do collectively to improve the lives of people with vitiligo. In my opinion there are two crucial communities that have lagged shamefully behind the rest in moving towards a better life for the 50 million or more people around the world who have this condition.

The mainstream medical profession

The first of these is the mainstream medical profession. I believe this really needs to provide better support for vitiligo patients from GPs and dermatologists. All family doctors and skin specialists should have up-to-date knowledge on the state of the art and best practice in vitiligo treatment. And they should all have an appreciation that vitiligo is neither an untreatable nor a harmless condition. There are many therapies that can halt or reverse it. And to say that it is harmless is to show complete ignorance of the many underlying or associated diseases that often accompany it. It also reveals a complete disregard for the psychologically devastating effects vitiligo can have.

Cultures that stigmatise vitiligo

The other sea change that is sorely needed is to do with the stigma associated with vitiligo in some cultures. To shun a person on the basis of a skin condition might have been understandable in the Middle Ages. But such ignorance and lack of basic humanity has no place in the 21^st century. In some communities individuals with vitiligo can find themselves cut off from families and friends or labelled unmarriageable and unemployable.

These attitudes can probably only be changed effectively from within those communities. So a lot will depend on vitiligo sufferers and advocates themselves, as well as better trained doctors, being more effective in hastening the pace of change here too.

A decade of positive change

The time has not yet come when we can say no one need live with the negative consequences of having vitiligo any longer. But we have covered a massive amount of ground in recent years… Not just in terms of awareness and quality of life, but also in personal and mutual empowerment, knowledge and understanding, treatments, support, communication, research, collaboration and real hope for the future.

What excites me most is that these trends are continuing to accelerate with the aid of technology. So, if you have read this post because you have been wondering what are the latest vitiligo developments you can expect to see in the rest of the decade, let me sum up my thoughts like this. There has never been a time like the 2020s when a person with vitiligo has had such good reason to be optimistic about the future. Nor have we ever seen so many individuals, groups and resources working to improve the lot of vitiligo sufferers. I firmly believe that this situation will continue to improve. And I am certain that the eventual goal of beating vitiligo completely is not only possible, it is inevitable.