It's what vitiligo is all about
It's a fair bet that most people would automatically associate the word “inflammation” with swollen joints, insect bites or infected wounds. But #inflammation can be completely invisible to the naked eye and it may or may not be accompanied by pain. It can occur in any organ and any cell in the body and it is involved in every type of illness and injury. In fact, you could say that inflammation = disease (in the real sense of the word, i.e. dis-ease) and an absence of inflammation = health.
As a non-scientist, I tend to think in descriptive terms about such things. A medical professional would be able to explain the inflammation process in a great deal of scientific detail, whereas I simply visualise it as an interruption or breakdown in an organism's natural balance. I'd be the first to confess that my description is vague and unscientific compared to a technically accurate one but it describes exactly the same reality and hopefully conveys it in a way that is easier for most of us to process.
There are many types of inflammation and they are not all necessarily cause for concern. For example, a sprained ankle, a flea bite or a bruise would all involve temporary, localised inflammation. A bad hangover or a bout of food poisoning would affect the whole person and, hopefully, not occur too often or last for very long. A case of flu can cause severe inflammation throughout the body that might last for several weeks. In all these instances, though, the inflammation is relatively short-lived because most people's internal systems (immune, digestive, circulatory, lymphatic etc.) are robust enough to do their job of righting the good ship “Healthy Human” whenever she hits stormy weather.
But a recurrent headache, ongoing joint pain, persistent indigestion, repeated allergy flare-ups or skin disorders are all examples of chronic inflammation that are highly unlikely to do anything other than continue to get worse unless action is taken to break what has become a vicious cycle of tissue damage. Left unchecked, such chronic inflammation typically leads to ever worsening general health as the constant degradation of the body's normal balance perpetuates a destructive chain reaction that produces more and more diverse symptoms, usually culminating in life-threatening illness. To make matters worse, the medication that is prescribed by most well-meaning but mystified doctors along the way, in their attempt to treat each new symptom as it arises, produces side-effects (as drugs invariably do). These side effects add to the burden of inflammation in the body so that, by the time the individual has descended into multiple mystery syndromes, full-blown autoimmune disease or any number of inter-related life-threatening conditions, finding and correcting whatever initially interrupted the balance of their good health would be like trying to find a hypodermic needle in a haystack full of other hypodermic needles under a pile of pills inside a locked barn in the middle of nowhere… without a map!
Modifying the immune response
It is well established that an inflammatory response is at the very heart of the development of #vitiligo and so some existing treatments, as well as current research into new treatments, focus on this aspect of the condition. They attempt either to neutralise the trigger for the inflammatory response - or else to interrupt, or prevent, the response in some other way – in the hope of stopping the de-pigmentation process in its tracks. For example, immune-suppressive and immunomodulator agents have been used (with varying results) to lessen the immune response to triggers but most of these have so far produced limited success with vitiligo and many unwanted side effects.
Tacrolimus (Protopic Ointment) and Pimecrolimus (Elidel Cream) are probably the best known, most effective and safest examples of this kind of treatment. They are proven to reduce inflammation but the side effects cited for both Protopic and Elidel are enough to make anyone think twice about using them. And the same can be said of corticosteroids like Triamcinolone, Hydrocortisone topical and Clobetasol Propionate.
Recent findings suggest that anti-inflammatory drugs developed for the treatment of rheumatoid arthrtis, like Tofacitinib (Xeljanz ) and Apremilast (Otezla) could potentially be of therapeutic benefit to vitiligo patients but the evidence so far is sparce and so much more research would be needed before coming to a definite conclusion on this.
Targeting free radical activity
Other treatments focus on the oxidative stress that is a feature of inflammation in vitiligo. These include pseudocatalase, which has been used in combination with Dead Sea climatotherapy or UVB exposure for the treatment of vitiligo. This treatment has enjoyed mainly positive reviews, a good safety record and very encouraging results but it is not without its detractors, with the authors of this paper even claiming it to be totally ineffective.
Another treatment I was alerted to recently involves the topical application Prostaglandin E2 (PGE2) as a treatment for vitiligo because of its stimulant and immunomodulatory effects on melanocytes but, whilst results were encouraging, it is still considered to be at the experimental stage. And yet another experimental treatment is Afamelanotide (Scenesse) which seeks to re-pigment vitiligo by preventing the inflammatory response to UV light.
Whilst the potential of these therapies for the future treatment of vitiligo is encouraging, their efficacy and safety have not yet been clearly established and, since we are talking in most cases about drugs with known side-effects (= more inflammation) and inconclusive results, my choice is still to reach for the contents of nature's own medicine chest when it comes to combating the inflammatory response involved in the de-pigmentation process.
Topical, dietary and supplemental antioxidants are known to reduce inflammation and restore acceptable levels of free radical activity in the body and they do this without fear of side effects. Applying naturally anti-inflammatory substances to the skin, like coconut oil or aloe vera is safe and can be effective as part of a wider nutritional and lifestyle protocol in treating vitiligo. Similarly, the use of custom-made vitiligo treatments like Vitix Gel and Vitix tablets, both containing natural antioxidant extracts that are proven to combat free radical damage without any known risk of adverse reactions seems to me to be a safer and more effective way of treating vitiligo, or indeed most chronic, inflammatory disease than taking unproven, experimental and potentially dangerous drugs and ending up buried in that drug-infested haystack inside a locked barn in the middle of nowhere… with no map.
Certainly, using nutrition as medicine to heal inflammation by restoring balance to my whole system, rather than working my way through the doctor's prescription pad with each symptom I developed, worked really well for me - virtually ridding me of all my white patches over a period of about 18 months. Not only was this result more dramatic than any I have found in any of the literature on pharmaceutical research to date but it was achieved without any adverse effects and, in fact, came with the added benefit of better general health too. No doubt this all-round improvement illustrates the point that, just as chronic inflammation can be a downward spiral, reducing inflammation by restoring balance throughout the body is an upward one.
“Season of mists and mellow flu-fulness ...”
It's that time of year again. The days are getting shorter, the air has a chill to it that holds the promise of frosty days and bitter nights to come and the trees are shedding their golden glory, forming satisfyingly crunchy carpets underfoot. Well, so much for the poetic beauty of autumn. But a more prosaic reminder that we have reached this point in the calendar is the abundance of public service posters and announcements encouraging everyone at particular risk of health complications to book their annual #flu-jab.
To jab or not to jab: that is the question
This poses, in fact, not just one, but two tricky questions for those of us who have #vitiligo (or any other autoimmune disease). 1) Does vitiligo count as one of those health conditions that carry a greater risk of flu-related complications? And 2) do any such risks outweigh those that might be associated with the flu vaccination itself? These are questions I ponder at this time every year because, even though my vitiligo is almost completely re-pigmented now (after spreading steadily for 5 decades) I know that I am still prone to certain de-pigmentation triggers and therefore cannot afford to be complacent.
So far, I have always chosen to run the risk of possibly catching flu over the potential risks of being vaccinated. I have never been quite sure whether this is the right decision – especially as I do usually go down with the flu once each winter. Nevertheless, I have continued to make that same choice, mainly because I have never noticed any adverse effect on my vitiligo as a result of getting the influenza virus, whereas most other #vaccinations and inoculations I have ever had in the past have left me feeling unwell. I am aware that this could be either coincidence or even imagination on my part and you could, quite reasonably, argue that catching the flu is likely to make me feel much more unwell. But my reluctance to have the jab is based on more than just a vague perception. I base it on a simple exercise of weighing up the potential pros and cons and realising that I am the only person who can make the decision because the doctors simply don't know whether it is wise for someone with vitiligo to have the flu jab or not.
Of course, the advice routinely handed out to anyone asking this sort of question is “ask your doctor”. But, since – in my experience - most doctors in general practice know less about vitiligo than the patients who have it, all you would get would be a well-intentioned opinion, based on limited knowledge. And, judging by everything I can find on the subject, asking a dermatologist would probably not be very much more helpful either. The fact is that the jury is still out on the subject of whether patients with autoimmune diseases should receive vaccinations and, to some extent, the jury is still out on the subject of whether vitiligo is a classic autoimmune disease in any case. So, where does that leave you and me? I think it leaves us to look at whatever evidence we can find and make up our own minds.
The battle ground
When it comes to vaccinations (not just the flu jab, but all vaccinations) feelings run high and opinions differ widely, both within the mainstream medical profession and the wider health system, as well as among the general public. No doubt some opinions are based on emotion and instinct, some on vested interests and some on a lack of accurate information. So this can make it difficult to get to the real facts – at least, the known facts, since the field of #immunology is still being explored and research still has a way to go before all of the questions we have about the immune system are answered.
Much of the controversy around the safety of vaccinations revolves around the question of infant inoculations. One camp says, quite rightly, that infant vaccination has saved millions of lives since it was introduced and has helped to eradicate a number of destructive and deadly diseases from the planet. When you look at the statistics, this is undeniable. Equally undeniable, though, is the fact that definite cause and effect has been established over the past few decades between significant numbers of individual cases of illness, and even fatalities, following vaccination. This is why the anti-vaccination camp argue that the body's own immune system should be left alone to do its job of protecting against infection and not be tampered with. From what I have read about infant vaccination, this view makes a lot of sense because to interfere with an infant's immune system while it is still in the process of developing does seem counter-intuitive and there appears to be quite a bit of credible scientific evidence to support this view. However, the question of infant vaccination is so complex and emotive that I want to confine this blog mainly to adult vaccination, since I am looking at this subject in the context of vitiligo, a condition that is usually not apparent until a person has past the infant stage. (But, I will refer briefly to the implications of infant vaccination later.)
10 known facts
I have read a lot about this subject while preparing this blog and realised what a minefield it is. So, rather than try to present all the research and the various conclusions and their implications in detail (which would require a skill set I don't have and would fill a very fat book into the bargain) I have decided to distill the known facts that I have been able to find into a very simple 10 point overview and draw some conclusions in relation to the question of vaccination for people with autoimmune disease in general and vitiligo in particular. I have then listed a number of references at the end to enable you to see how I came to my conclusions.
In coming to my own conclusions, I needed to filter out some of the misleading and biased information to be found on the topic of vaccinations online. I recognise that some doctors and researchers may be swayed by vested interests and personal reputation. And, as regards the views of non-scientists, there is a lot of well-intentioned but often ill-informed popularist hype on the subject.
It was hard for me not to get swept along by some of the views of the anti-vaccine lobby because I am a great believer in the power of nature to promote good health, so I instinctively feel that the immune system should be left to do its thing so that immunity to infection can be developed naturally over the course of a lifetime. My own, perhaps simplistic, view is that vaccinations would probably not be necessary if people all ate correctly from infancy to old age and lived in healthy environments, drank pure water and avoided environmental toxins. (But, of course, this is not the case.) And, for those of us who are prone to autoimmune disease, I believe that the answer should not be to boost or suppress the immune system artificially, but rather to balance it naturally.
However, putting my instincts on hold temporarily, I wanted to get to the bottom of the science behind the whole question and the best expert resource I found whilst I was reading up on this subject was Professor Yehuda Shoenfeld, founder and head of the Zabludowicz Center for Autoimmune Diseases attached to Tel-Aviv University, Israel. Based on his findings, as well as on everything else I have read so far, my own conclusion is that I shall be sticking to my policy of avoiding vaccinations wherever possible because the likelihood is that for someone with my genetic and medical history (a vitiligo sufferer who is also prone to allergies) vaccinations are likely to cause more problems than they cure.
Suggested reading & links
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.