When, as a child, I was originally diagnosed with this thing called #vitiligo (as long ago as the 1960's) doctors knew almost nothing about it and the general public knew even less. Because the mysterious white patches on my skin had a scary name and no cure I simply accepted that I was diseased. Now, decades later, scientists know a lot more about vitiligo, family doctors know a little more than they used to and the general public typically have a vague idea that it has something to do with the late Michael Jackson.
For my part, several billion gallons of water have passed under the bridge and I know a great deal more about vitiligo than I did just 6 years ago. I have transitioned from 90% de-pigmented to 98% fully pigmented since then and have become an avid reader of all things vitiligo-related. I no longer believe that vitiligo is a disease as such, at least not in the sense 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 is the same. In fact, it seems to me that the broader term “leucoderma” (sometimes spelled leukoderma and meaning "white skin") is a better name than vitiligo because it is descriptive of the symptom of pigment loss and 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 commonly used term, I shall continue to use it.
How should vitiligo be classified?
I find it interesting that the terms used to refer to individual cases of vitiligo are themselves far more descriptive of the symptom than of a 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 and which is generally thought to be the result of autoimmune activity. Less common is Segmental Vitiligo in which 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 is also sometimes used to refer to cases involving just one, or a very few, de-pigmented patches, whereas total de-pigmentation is often referred to as Universal Vitiligo. However, these latter two terms would seem to describe the extent of de-pigmentation rather than a distinct type of vitiligo. Some cases of so-called Focal Vitiligo are the result of occupational or environmental hazards like exposure to industrial or household chemicals or, alternatively, they may subsequently prove to be the first signs of Segmental Vitiligo. Similarly, Universal Vitiligo could either describe someone who has deliberately de-pigmented for cosmetic purposes (seeing it as their best chance of achieving one uniform colour) or, indeed, someone whose Non-segmental Vitiligo has affected their whole body.
Whilst this system of classification serves a purpose by providing some kind of accepted terminology for vitiligo cases, it does little more than describe the distribution and extent of de-pigmentation. What strikes me as more meaningful is when the different examples of vitiligo are classified in terms of what causes them. For example: Autoimmune (i.e. where the immune system mistakenly targets and kills pigment cells - a cause generally associated with non-segmental vitiligo); Neurochemical (i.e. where the melanocytes are killed by the release of toxic neurochemicals from nerve endings in the skin – a cause usually linked to segmental vitiligo); Autotoxic (possibly due to genetic defects that cause the melanocytes to self-destruct) and Occupational (resulting from contact with environmental toxins).
The advantage of this kind of classification system is that, instead of focusing on the symptom, they focus on the causes. After all, it is the causes - not the symptoms - that give us 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 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 process of cause and effect might be going on in the same body?
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 (for want of a better term) 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.
In my own case, I have found it odd that my skin de-pigmented in two distinctly different ways and then, finally, re-pigmented in two distinctly different ways too. Some of my patches were heralded by 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 I, and who knows how many other vitiligo sufferers, may 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.
If you are reading this and thinking that we are no further forward as we come to the end of this blog than we were at the start, I would have to agree with you. I have pondered, theorised and asked a bunch of questions for which I have no comprehensive 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:
The protocol I used 6 years ago to reverse my vitiligo so dramatically (and so far, permanently) 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 are involved in the pigmentation process and combining these with sun exposure, whilst also boosting my intake of antioxidants and health-boosting super-foods.
It is only now, since learning so much about the various causes of pigment loss and the best ways of combating them (as listed above), that I have a greater understanding of why the particular supplements and moderate but regular amount of sun exposure I used worked so incredibly well. (Roughly 98% re-pigmented, having been 90% de-pigmented by my late 40's). 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 6 years without any relapse is not the same as a lifetime guarantee. And, more importantly, a few success stories here and there is 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, in order to add to my list of effective anti-vitiligo strategies.
My name is Caroline.