Vitiligo: a symptom with multiple causes

Last Updated on 30th September 2022 by Caroline Haye

Not a disease as such, but a symptom of other issues

When, as a child, I was originally diagnosed with this thing called vitiligo it was the 1960s. Back then, doctors knew almost nothing about it. And the general public knew even less. The mysterious white patches on my skin had a scary name and no cure. So I simply accepted that I was diseased. Now, a half century later, scientists know a lot more. (Family doctors know a little more than they used to. And the general public typically have a vague impression… They may know it has something to do with the late Michael Jackson and the model Winnie Harlow.) But a cure is still some way off. And the reason seems to be this… That this skin disorder we call vitiligo is not a disease, as such, but a symptom with multiple causes.

For my part, several billion gallons of water have passed under the bridge since my diagnosis. And I know a great deal more about vitiligo than I did then. More, even, than a few years ago. I have transitioned from 90% pure white to 98% fully re-pigmented since then. And I have become an avid reader of all things vitiligo-related.

As a result, I no longer believe that vitiligo is a disease in the sense that we normally understand the word. At least, not in the way that malaria or the mumps are diseases. I believe it is a symptom, just like a cough is a symptom. And, just like coughs, not all vitiligo has the same cause. In fact, it seems to me that the broader term “leucoderma” (a.k.a. leukoderma, meaning “white skin”) is a better name than vitiligo… Because it is descriptive of the symptom of pigment loss. And it sounds a little less like some sort of contagious or infectious illness. (Which, of course, it is most definitely not). But, since vitiligo is the most common term, I’ll continue to use it.

Categories of vitiligo

I find it interesting that the terms used to refer to individual categories of vitiligo are themselves more descriptive of symptoms than of disease.

The most common is Generalised Vitiligo (a.k.a. NSV or Non Segmental Vitiligo) in which the white patches are mostly scattered symmetrically on both sides of the body. Less common is Segmental Vitiligo. This is when single or multiple sections of skin on one or other side of the body lose their pigment without any corresponding patches on the other side.

The term Focal Vitiligo refers to cases involving just one, or a very few, de-pigmented patches. Whereas total de-pigmentation is called Universal Vitiligo. However, I assume these two terms simply describe the extent of de-pigmentation rather than necessarily a distinct type of vitiligo.

Useful terminology?

These labels are handy terminology for describing individual vitiligo cases. But they mainly just describe the distribution and extent of de-pigmentation. They don’t indicate the causes of these symptoms. Perhaps is would be more meaningful to classify it in terms of causes (if we understood them all). For example, these are some of the multiple theories about what causes vitiligo…

• Autoimmune (i.e. where the immune system mistakenly targets and kills pigment cells).
• Neurochemical (the theory that melanocytes are killed by the release of toxic neurochemicals from nerve endings in the skin).
• Autotoxic (possibly due to genetic defects that cause the melanocytes to self-destruct).
• And Occupational (resulting from contact with environmental toxins. See Vitiligo or Chemical Leukoderma?).

​The advantage of this kind of classification system is that, instead of focusing on the symptom, they focus on the multiple causes.  After all, it is the causes – not the symptoms – that presumably provide the best clue as to possible cures. But, of course, it is not as simple as that. Because how do you tell the difference between a root cause and a trigger? For example, emotional stress, physical trauma or hormonal changes can all lead to de-pigmentation. But can any of these be described as root causes of vitiligo? Or are they just events that accelerate a pre-existing process? Added to that is the possibility that, in some cases, more than one disease process might be occurring in the same individual.

Can a person have more than one kind of vitiligo?

The reason I wonder about this question is because I have noticed that vitiligo seems to have a “split personality”. It sometimes behaves in ways that would suggest it is not one single skin condition, but several. I have heard, first hand and in published research, of examples of vitiligo patients experiencing simultaneous re-pigmentation of some patches and de-pigmentation of others.

I occasionally receive emails from people undergoing various vitiligo treatments who experience this strange combination of improvement and deterioration at once. And it is tempting to conclude that the treatment (more often than not, it is phototherapy) is helping one type of vitiligo whilst aggravating another.  On the other hand, maybe it is a case of using multiple therapies, some of which are helping whilst others are doing the opposite.

My own experience

In my own case, I have found it odd that my skin de-pigmented in at least two distinctly different ways and then, finally, re-pigmented in at least two different ways too. Some of my patches only appeared after intense itching and a rash, which then cleared to leave a white lesion underneath… Whereas others just gradually emerged like pale shipwrecks being slowly lifted from under the sea… Becoming more distinct each time I looked at them. Then, during re-pigmentation most areas developed freckles which eventually joined up, whereas others gradually and uniformly regained their normal tone.

So, I have to wonder if some people in fact have more than one type of vitiligo (if we classify the condition in terms of cause). And, equally, I wonder if it is possible for one person to have more than one category of vitiligo (if we classify in terms of symptom). In other words, could someone with NSV (Non-segmental Vitiligo) also have Segmental Vitiligo. After all, not every single lesion always has its mirror image on the opposite side of the body. And it is surely possible for anyone to develop a one-off patch as a result of chemical contact, no matter what other type of vitiligo they may have.

Answers?

You may be thinking we aren’t much further forward now than we were at the start of this post. And I would agree. I have pondered, theorised and asked a bunch of questions for which I have no real answers. (And neither, I suspect, do most dermatologists).  However, there is good news among all this complexity and uncertainty. And that is the fact that we don’t necessarily have to have all the answers to all the questions in order to treat vitiligo effectively. Sure, the scientists will need a lot more answers before they can give us a full cure. But, until that happens, there appears to be plenty of clinical and anecdotal evidence around to show that certain treatments can and do help to reverse vitiligo.

I am certainly not alone in having found an approach that works for me. Up to a point, the success of individual treatments seems to vary from one person to the next. And maybe this just reflects the variety of causes described above. But, from my own experience and everything I have read about others, virtually all the successful treatments have some, or all, of the following in common…

Successful vitiligo therapies:

• address the causes of vitiligo both from the inside and the outside
• correct nutritional deficiencies and digestive issues
• focus on increasing antioxidant levels in the body and on the skin
• normalise the immune system (i.e. balancing it as opposed to just suppressing it, as some drug treatments do)
• stimulate melanocyte activity with UV light (sunshine or phototherapy)
• avoid known triggers.

The protocol I eventually used to reverse my vitiligo and keep it under control was one I fell into almost by accident. I didn’t know, in advance, that it would work. I just saw a certain intuitive logic in the idea of supplementing with the nutrients that play a role in the pigmentation process… And combining these with sun exposure, whilst also boosting my intake of antioxidants and health-boosting super-foods.

Final thoughts

It is only now, since learning so much about the various causes of pigment loss and the various ways of combatting them, that I have a greater understanding of why my approach worked so well. (i.e. the particular nutrition supplements together with moderate but regular amounts of sun exposure.) To regain roughly 98% of my pigment, having been 90% pure white by my late 40s, is a pretty dramatic improvement. If I never gain any more pigment for the rest of my life, I will still be overjoyed at my results.

However, 98% is not 100%. And I accept that there is no such thing as a lifetime guarantee. I also appreciate that pockets of success stories here and there are not the same as millions of success stories globally… Which is why I still scour the internet, reading every piece of research and every theory and anecdote I can find, so that I can add to my understanding and awareness of the multiple causes and possible therapies for this symptom we call vitiligo.