How I control my vitiligo

Last Updated on 28th March 2023 by Caroline Haye

A story of vitiligo management

Once upon a time (not very long ago) hardly anyone knew hardly anything about a hardly talked-about condition. That condition was called vitiligo. Then, very gradually, people actually did start to talk about it. They learned more about it too… much more. But they didn’t all agree on what to do about it. Views differed on what caused it and how it should be treated, or even if it should be treated at all. However, there was one thing most of them did agree on… They agreed that vitiligo was incurable. I would love to tell you that they were wrong but, of course, I can’t. What I can tell you though, from my own experience, and others, is that it is possible to reverse, and manage this skin disorder, even if it can’t be cured. And it frustrates me that more people aren’t aware of this fact. So on this page I am going to explain exactly how I control my vitiligo.

Experimentation

The way I have succeeded in managing my vitiligo for the past decade is by following a routine that began with some simple experimentation. Like so many people, I had tried various different medical and alternative therapies for my white patches. Most did not help at all. And some were worse than useless. But, after a lot of trial and error, one “experiment” began to produce real improvements that went way beyond my expectations. And these, to my delight, eventually turned into near total re-pigmentation.

Of course, the thing about experimentation is that it can be unpredictable. What works for one person may not work for another. So that’s why I am so glad I didn’t give up looking for answers after so many disappointments. (In my case, the failures included PUVA and herbal remedies.) If I had stopped looking and hoping, I would not have bothered trying one more time. And I might never have discovered that my vitiligo was actually treatable after all.

When I talk about experimentation, I must stress that I didn’t just try every product or procedure I came across without regard for its quality, safety or rationale. Apart from anything else, I didn’t have unlimited funds to splash out on countless remedies. So I did my due diligence, in terms of researching every option and understanding as much as possible about the science, or at least the logic, behind their claims.

Common sense and due diligence

In deciding what therapies to try, I had to use my own common sense. After all. a doctor can give you a diagnosis of vitiligo and explain currently available medical options. But it’s up to each one of us to make sure we get all the available information (both official and alternative). And it is up to us to weigh this information up and decide what, if anything, to try. Of course, you might say this about any health condition, but it is especially true of those, like vitiligo, where there is no standard treatment and doctors can offer only limited suggestions.

In my case, I had plenty of time to gather information and consider my options. At the time of my diagnosis (in the 1960s) my doctor had zero options to offer. By the ’80s PUVA had become available on the NHS, so I tried that. And, although it didn’t work for me, I did read up on the rationale behind it and learned how UV light stimulates pigment. I noticed that the therapies that had the best track record in re-pigmenting vitiligo all involved UV light. But it was obvious that UV alone was not the whole story. If it had been, I would simply have been able to sunbathe my skin back to health… Instead of which even the shortest exposure caused my white patches to start burning.

Choosing a nutritional programme

As I read more about vitiligo therapies I found frequent references to the importance of nutrition and noticed that certain vitamins and minerals regularly cropped up in the literature. In particular, the B vitamins (especially B12), tyrosine, copper and zinc all featured in relation to the pigmentation process. And certain deficiencies, for example low levels of B12, vitamin D and antioxidants frequently got a mention in relation to vitiligo. So I started to wonder if supplements would help me.

As I had suffered with digestive problems all my life, it seemed logical to me that I might have developed some nutritional deficiencies. So supplementation seemed like a sensible option to explore, if only for the benefit of my general health. But what if this was the missing link in relation to my vitiligo too? It seemed to much to hope for, but I hoped anyway.

The background knowledge I had gathered over the years all came into focus when I came across a nutritional supplement that claimed to boost the body’s ability to produce a natural suntan. Looking at the list of ingredients, I immediately recognised the formulation as being a combination of exactly those nutrients I had been reading about in connection with the body’s pigmentation process… Which is why I chose Boost as the basis of my nutritional experiment.

My thinking was that supplementing with the vitamins and minerals specific to the tanning process was one part of the equation. But this still left the likelihood that I also needed to increase my levels of antioxidants to combat oxidative stress. So I added in a super-green food to my daily routine. You can read about all the supplements I took, on my Nutrition Summary page.

Patience and perseverance

Remembering the importance of UV light, I made sure I had as much sun exposure as my skin could comfortably tolerate. Interestingly, after only a few days of taking the supplements, I found I could stay out longer in the sunshine than I was able to previously. So, maybe this meant my skin was starting to get the support from inside that it had previously lacked.

Having started my regimen of supplementation (daily) and moderate sun exposure (every couple of days, on average), I felt I had to give the experiment enough time to either work, or not work. Every vitiligo treatment I had ever heard of required time to produce results, so I was prepared to give it 6 – 12 months or more, if necessary, as long as I had no adverse effects. In reality, I actually felt much better in myself (including the digestive symptoms I had always suffered from). So I was happy to surrender myself to the process without becoming obsessive about checking my patches every day for signs of change.

Care and attention

Despite my relaxed attitude, I had learned enough about vitiligo by then to understand the need to avoid potential triggers. (Since then, researchers have discovered that our skin has a vitiligo memory of sorts. De-pigmentation will return if you give it half a chance. So, if you stop doing the things that enabled your body to re-pigment, the odds are that your white patches will start to come back (probably in the same shapes and locations as before). Knowing that sunburn and other types of skin trauma can cause de-pigmentation, I tried to avoid both and I made sure I stuck to my nutritional programme without fail.

Not only was I careful to stay out of harm’s way, but I also kept a close eye on any changes to my skin. I was taken by surprise when a lot of freckles of new pigment appearing. I hadn’t really expected it. So now I was keen to be able to chart my progress and began taking photos so that I could make ongoing comparisons. I ought to have taken before pictures at the very beginning of course but it didn’t occur to me at the time. (Maybe I was scared of tempting fate, I don’t know.)

Controlling vitiligo is like controlling traffic

My perception of vitiligo is that it is a bit like traffic. It is always there. Sometimes it moves fast. Other times it slows down. And often (like the M6) it is stationary for long periods of time. Occasionally it can appear to be coming and going simultaneously, like vehicles crossing each other at a junction. But, whereas the aim of traffic lights is to keep traffic moving and allow it to get ahead, the aim of vitiligo management is to reverse its direction and / or stop it dead in its tracks.

It seems to me that successful vitiligo management relies, broadly speaking, on two things… 1. Knowing what to do and 2. knowing what not to do. (Like most things in life, I suppose.) So here is a list of my top dos and don’ts. I hope they help you too.

What to do about your vitiligo

• Get a diagnosis
• Find out what treatments are available
• Be proactive about getting your chosen therapy
• Take before and after photos
• Ensure you follow your chosen protocol consistently and be patient
• Be prepared to try more than one treatment (“different strokes for different folks”)

What not to do about your vitiligo

• Be unsure of your diagnosis
• Let it obsess or depress you
• Ignore it (unless this is a deliberate and positive coping mechanism)
• Expose your skin to traumas, sun burns or harsh chemicals
• Try treatments without checking out their safety or ingredients
• Ignore your general health and fitness

Why is vitiligo management not a common concept?

The reason I wanted to devote a blog post to this topic is because I’m shocked that most people with vitiligo don’t realise that they can influence their condition. Most are unaware that there are things they can do to make their condition worse…. Or that there are things they can do to make it better. There seems to be a fatalistic attitude towards vitiligo that doesn’t apply to other incurable skin conditions, like psoriasis for example. No one questions the wisdom of managing other skin disorders or other autoimmune conditions. (And, dare I say, no one suggests embracing them either.) So, why should vitiligo be any different? And why isn’t vitiligo management a common concept among doctors and in the vitiligo community at large? In my view, it should be.