2 conclusions and 4 tips for UV exposure
Many of us are finally emerging from what has seemed like endless chilly winter months and are looking forward to the light and warmth of summer. As the years since my re-pigmentation pass (and, it has to be said, as I get older) I find I crave sunlight more and more. So springtime finds me in a state of eager anticipation, keen to dust off our cobwebby sun loungers and get out into those healing rays after such a long time swaddled in woollies and fleeces.
The years I used to spend dreading hot and sunny weather seem to belong to another life now, although the memory of those feelings is still very clear in my mind. The prospect of having to cover up my vitiligo patches with clothing or cosmetics to avoid social embarrassment, when everyone around me was baring their flesh with carefree abandon, used to plunge me into a state of gloom, bordering on bitterness and self-pity, unattractive emotions that I used to mask just as carefully as I camouflaged my white patches. The whole rigmarole of hiding my vitiligo during the summer, and hiding my feelings about it, was troublesome and sometimes quite exhausting. I simply never came to terms with the condition sufficiently to go anywhere without my make-up or sunless tan on or my flesh expertly covered in well-chosen clothing. This often left me feeling tense and on edge throughout the very season when I should have been relaxing and enjoying outdoor fun with family and friends.
Nowadays, the only time I revisit those emotions is when I hear from others who are going through the same situation as I did back then. One of the most frequently asked questions I receive each spring and summer relates to the pros and cons of sun exposure: whether or not it should be avoided, whether sun protection should be used and, if so, what kind, etc.
So, in this blog, I would like to pass on some of my own experiences and impressions around this issue, in case you are wrestling with it yourself at the moment. The following comments are based on my own observations, as opposed to any formal, scientific evidence. But I hope you find them useful anyway.
Despite my first small patches of vitiligo developing when I was just a toddler, family photos show that I did otherwise develop a light, even tan whenever I spent time outdoors. By the time I reached my teens I had come to realise that what had become, by then, my annual sunbathing ritual in pursuit of a fashionable tan was leaving me with several new vitiligo lesions each summer. My perception of this (and I still believe this to be true) was that my sunbathing was not the cause of my pigment loss but that it simply revealed a process that had been occurring throughout the rest of the year.
I could see that the condition was spreading and it began to feel like a race against the inevitable to see how many more years I could enjoy developing a natural tan (with the aid, by then, of some camouflage here and there). I sensed that, sooner or later, I would have to start avoiding the sun altogether so as to make the contrast between my vitiligo and my normal skin less obvious. Eventually, the effort involved in trying to tan at the same time as hiding my white splotches became too much, added to which the de-pigmented skin was very prone to sunburn. I used to find I could only stay out in strong sunshine for about a minute before it started to burn. I used to feel myself frazzling, almost as if my skin was in contact with a red-hot poker. So I started to avoid sun exposure as much as possible, which I found quite depressing.
I now know that avoiding the sun is not only bad for morale but it further lowers vitamin D levels, which are typically lower than normal in vitiligo sufferers to start with. And even if you use sun protection creams you increase the risk of chemically aggravating your vitiligo. So, if sunbathing makes vitiligo patches burn and increases the contrast between them and the surrounding skin and SPFs are best avoided, what is a person supposed to do?
2 conclusions about sunshine and vitiligo
Well, my own experiences over the last 8 years and all of the information that I have absorbed on the subject have led me to the following conclusion: that UV light (whether sunlight or artificial UV) helps to reverse vitiligo but generally only in the following circumstances …
I was one of those cases for whom phototherapy alone was completely unsuccessful. I had tried PUVA as a young woman but it had no effect whatsoever on my vitiligo, except to make it sore. It turned pink, then pure white again.
I have come to believe that this is what happens when you try to “force“ the tanning process to occur (in this case by simply using a photosensitising agent plus UV light) without giving the body sufficient nutrients for the pigmentation to take place.
It was not until I had started to provide my body with supplemental tanning-related nutrients (in the form of Boost) and strong antioxidant protection (plus a variety of additional nutritional support in the form of Five a Day green formula) that UV exposure began to re-pigment my vitiligo patches instead of burning them. This experience confirmed my suspicions that the digestive problems I had always had since early childhood, must have left me depleted in these nutrients and that this was the reason for my vitiligo (as well as for the Chronic Fatigue that had plagued me since early adulthood).
Once I had been taking supplements for a week or so I noticed I was able to stay outside for significantly longer without burning. As a result of doing this on a regular basis for several weeks, my pigment started to return and this process continued until virtually all of my natural colour had returned. When I then switched to narrowband UVB therapy through the winter months I found this protocol a dramatically different experience from my previous ill-fated experiment with PUVA. The UVB perpetuated the rapid re-pigmentation that had started during the summer and actually seemed to accelerate it.
My feeling is that, as long as you are providing correct nutritional support to your body, it does not make a huge difference whether you use natural sunshine or whether you opt for phototherapy instead. Phototherapy has the advantage of being available year round and of being easier to administer with scientific precision. But sunshine is free of charge and a much more pleasant relaxing experience :)
My top 4 tips on UV exposure
Since people often contact me and ask for my views on the use of sun protection products, here four of my top tips:
I hope my observations on this topic have been helpful in some way. It’s fair to say that my relationship with sunshine has changed dramatically over the years. As a child I loved it. As a teenager I struggled to hang on to that love. For much of my adult life I feared and avoided it. Now I see it as a source of warmth, relaxation, enjoyment and – above all – healing. I really hope that if there is anyone reading this and finding themselves in a dark place this summer (either literally or emotionally) you might start to view sunny weather positively once more. Instead of dreading it, maybe you will decide to welcome it and use it as a vital part of your journey back to health. I do hope so.
Healing skin by switching on our self-repair system
In part 1 of this blog I posed the question “could lack of #sleep be a factor in the development of certain chronic disorders, including #vitiligo?” and concluded that the answer is almost certainly yes. What prompted me to ask the question in the first place was a video that a vitiligo friend recently invited me to look at about vitamin D, deep sleep and gut bacteria (thanks for sending the link, Mira!).
Whilst I have blogged a few times in the past on the impact of both #vitamin-D deficiency and #digestive disorders in relation to vitiligo, I had never given much thought to the role of sleep in this context. If you had asked me – prior to seeing the video – how important I though it was for vitiligo sufferers to get a good night’s sleep, I would have said that it was no doubt very important for health in general, and possibly even more so for anyone with chronic health problems. But that would have been the extent of my insight into the topic. But once I listened to sleep expert Dr. Stasha Gominak describe her experiments and observations relating to the involvement of certain nutrients (especially vitamin D) and the communication that has to take place between the gut and the brain in order for therapeutic, deep sleep to occur, I began to appreciate that there is an awful lot more to the subject than I ever imagined.
We are designed to be completely self-healing
I began to wonder if sleep disorders might play a part, not only in the development of vitiligo, but also in its generally poor response to most treatments. In other words, I wondered if a lack of deep sleep might be one of the triggers for de-pigmentation and whether – if left untreated - it might also hamper all attempts at reversing the process. If this were in fact true, it could be very good news, since improving a vitiligo sufferer’s quality of sleep would then presumably both spontaneously improve their vitiligo and improve the effectiveness of vitiligo treatments simultaneously. According to Dr Gominak, we are indeed designed to be completely self-healing. (What a wonderful concept that is – I love it and I only wish that modern western medicine would open its mind to this view. I am sure that it would revolutionise our health systems and the health of entire populations.)
The link between poor sleep and chronic illnesses like vitiligo
During deep all kinds of fascinating things happen. Our muscles become paralysed – in effect, we shut down in order for repairs and maintenance to take place. Scientists involved in brain stem research have discovered that the neurochemical “on/off switch” for this state of paralysis, which is located in our brain stem, contains vitamin D receptors, which indicates that the presence of vitamin D is required before deep sleep can occur. So what does that mean for those of us with subnormal levels of vitamin D (that includes the typical vitiligo sufferer)? Well, Dr Gominak notes the strong correlation between the increase in vitamin D deficiency (mainly due to our modern indoor lifestyle) and the increase in sleep disorders. And she also points to the parallel increase in “modern” illnesses like Fibromyalgia, Chronic Fatigue, IBS and Coeliac (Celiac) Disease.
Her experience with her sleep disorder patients has shown that raising vitamin D levels in many cases significantly improves the quality of their sleep and the extent of their ability to self-repair, resulting in the reduction or complete elimination of a whole host of chronic symptoms. (She also goes on to explain the role of vitamin B supplementation, and of pantothenic acid in particular, in sustaining this recovery after the first couple of years, so I recommend watching the video if you want to understand the whole picture.)
Do you know how well (or otherwise) you sleep?
It is worth mentioning that many people with sleep disorders don’t realise they have one. You don’t even have to have a recognised sleep disorder to suffer from insufficient deep sleep. I have always thought of myself as someone who sleeps fairly well. But, now that I consider it carefully, one of my earliest memories is of regularly having difficulty getting to sleep as an infant in my cot because of stomach cramps (due, I now realise, to digestive issues). And there have been many times, as an adult, when I have suffered bouts of insomnia for the same reason – and sometimes for no apparent reason. Even when I get a full night’s sleep, I have no way of assessing the quality of that sleep. But the fact that I suffered with chronic fatigue for most of my life does make me wonder. I would imagine that long-term sleep disorders are one of the most likely causes of chronic fatigue, since they prevent the body from completing its re-calibrating and repairing routines each night. Interestingly, all of my symptoms improved – simultaneously with my re-pigmentation - after I adopted my nutritional protocol. So does that mean that my digestive problems were causing me to sleep poorly or that poor sleep was causing the digestive problems? And which of these (if it wasn’t both together) might have been a trigger for my vitiligo? In a sense, it doesn’t really matter which came first as long as the cure for both is the same. But it would still be interesting to know.
The relationship between sleep and vitiligo
I can find no research into the relationship between sleep and vitiligo specifically, although there is plenty of evidence to suggest that stress can trigger and aggravate the condition and there can be no doubt that lack of sleep increases stress levels. What is known is that sleep deprivation contributes to the development of chronic illness generally and this scientific paper points to possible links between sleep disorders and autoimmune diseases (of which vitiligo is considered to be one).
It would be helpful to know if there is a higher incidence of sleep disorders among vitiligo sufferers than the rest of the population (or indeed if there is a higher proportion of vitiligo cases amongst sleep disorder sufferers than might be expected). It would also be helpful to know if lack of quality sleep simply exacerbates the condition or if it is, in fact, part of the disease process itself. For example, might the faulty digestion and poor nutritional status experienced by so many vitiligo sufferers (which I believe to be a central cause of pigment loss) be due to certain critical, sleep-time processes simply not occurring? I don’t think anyone knows the answer to that question (and I’m not sure that anyone else has thought to ask it). But this blog might be an opportunity for readers to share their own experiences and perceptions on this subject.
So, please feel free to leave comments below about the quality of your sleep and whether or not you feel there is any connection with your vitiligo. Maybe, between us, we can shed a little more light on this fascinating topic, or - failing that - at least share some useful tips on how we might all improve our sleep.
I will keep an eye on incoming comments and respond where appropriate. But please forgive me if I sometimes reply belatedly. When it comes to blog comments, I tend to check them once a week rather than every day, so if I don't answer to specific questions straight away please don't think that you have caught me napping!
Night, night - sleep tight ;)
How to REMove your white spots
It doesn’t seem long since I was soaking up some late summer sunshine in the garden and feeling incredibly grateful to see a nice, even tan in all the places where my white vitiligo patches used to be (except for a couple of freckled areas on my hands and feet that are, amazingly, still blending in after all these years). A fairly dry and bright autumn has come and gone since then, followed by the onset of an inevitably wet and chilly British winter. Last week a deluge of rain fell here in the far north west of England, creating serious flood waters in a matter of hours. These threatened to seep into our house, but thankfully, stopped just a few feet short before subsiding. Now, as I write this, I am looking out of the window at a soggy but peaceful scene. Only a handful of leaves still cling tenuously to the branches while the rest lie decaying on the ground. All the flowering shrubs and bulbs have died back and are resting, apparently devoid of life but actually drawing in nutrients and storing up their vital forces ready to burst forth in a riot of colour and energy again in the spring.
Mother Nature’s seemingly miraculous annual cycle of renewal makes me wonder at her ability perpetually to regenerate and thrive when left to her own devices. Surely there can be no logical reason to think that animals (including humans), being part of the natural world, should not also share this marvellous ability. After all, we are constantly dying and regenerating at a cellular level. Some people claim that by the end of any given 7 to 10 year time span every one of our cells will have regenerated, meaning that we become a completely new being. (Whilst this may not be strictly true, the concept is broadly correct.) And yet, of course, we are still the same individual with - hopefully - the same memories and personality. I find it amazing that our body knows how to recreate each part in exactly the same way each time, as if it has a set of blueprints to follow. In fact, it does have a genetic set of instructions, which I suppose is why most of us don’t mutate every few years into a completely different animal! And, as if that wasn’t impressive enough, every night we enter a state that resembles hibernation as we lie down, dormant, for 8 hours, apparently barely alive but in reality doing the same thing as the plants outside my window are currently doing: processing nutrients, resting, storing up energy and renewing ourselves.
Whilst sleep is something we all spend around one third of our lives doing (or, in some cases failing to do), most of us understand very little about it. It is a mysterious activity that, by definition, takes place somewhere beneath our consciousness and beyond our comprehension. Like so many physical functions, we are largely unaware and unappreciative of it… until it goes wrong. And when it does go wrong, on a consistent basis, it leaves us feeling wrecked. We may not understand why we feel so awful but sleep experts – who are gaining more and more insight into the purpose of sleep and the consequences of sleep deprivation – would probably agree that the term “wrecked” is an apt one, since it well describes the damage that occurs at a cellular level inside our body and brain when we do not get enough quality sleep. Just as a never-ending summer with no period of hibernation would eventually kill the plants in your garden, lack of deep sleep over the long term will eventually wreck your health from the inside out!
Why is sleep so important?
Everyone knows that getting a good night’s sleep is essential to looking good and feeling good. The term “beauty sleep” is a universally familiar one and generally refers to superior quality, restorative sleep as opposed to short naps or sedative-induced states of unconsciousness. More specifically, it was traditionally used to describe sleep that occurs before midnight, since popular belief had it that “an hour of sleep before midnight is worth 2 hours of sleep after midnight”. Up to a point, this is apparently one of those rather insultingly named “old wives’ tales” (but being a less than young wife myself, I feel I may use the term without fear of criticism). However, the belief does have some basis in fact. According to the Centre of Integrated Research and Understanding of Sleep (CIRUS) in Australia, it is not the actual time of day or night an individual goes to sleep that matters. No matter what time the clock says, sleep is at its deepest and most beneficial during its early stages (specifically during the first two cycles).
Another proverb (an Irish one) says “A good laugh and a long sleep are the best cures in the doctor’s book”. There is no question in my mind that laughter is powerful medicine (but I think that is probably a subject for another blog post). As to the length of sleep required for optimum health, current medical opinion suggests an average of 8 hours a night for an adult in normal health, more for adolescents and anything up to 12 hours for children. And, whilst sleeping long enough – but not too long - is important, experts agree that it is actually the quality of our sleep, not just the quantity, that is crucial. So what exactly is meant by quality sleep?
Studies show that sleep is made up of repeated cycles, each lasting about 90 minutes and consisting of two distinct parts. These are referred to as NREM (non-rapid eye movement ) and REM (rapid eye movement). These parts can be further categorised into light and deep sleep, with most deep sleep occurring during the first one third of the night and becoming lighter – and with longer periods of dreaming - towards the end.
Each phase of sleep presumably serves a particular purpose but it is thought to be during the periods of deep NREM sleep, when the heart rate slows, blood pressure drops and body temperature is at its lowest, that the most beneficial effects are derived. Precisely what is going on in the brain and the body during deep sleep is still not fully understood but it is in this phase, when the body is outwardly at its least active, that the brain and all the body’s cells and networks are, in fact, very active indeed: busy running all of the repair and maintenance routines that presumably cannot be accomplished during waking hours or during light sleep. If we get enough deep sleep we should wake up feeling like a new person.
Becoming a new person: sleep and our genetic code
I mentioned earlier that, mercifully, we do not mutate into different beings every time our cells renew. But, of course, we do change. For one thing, we grow older and, for another, we sometimes develop symptoms that weren’t there before. Sleep studies consistently indicate that people who are regularly deprived of sleep, whether due to lifestyle or sleep disorders, develop more of the symptoms of ageing and of chronic illness than those who enjoy good quality sleep. This is something that we all instinctively know to be true but which is only now being scientifically measured and better understood. Given that sleep is such a crucial part of the regeneration process, it seems likely that it is also essential in ensuring our genetic blueprint is faithfully maintained and recreated. As far as we know, we are all born with a set of genetic instructions that specifies we should each have a particular, uniform skin colour. So it is pretty clear that, in cases of vitiligo, something is going wrong at some point in the process of regenerating those skin cells (a process that takes approximately 4 weeks). Similarly, there are many other chronic conditions, syndromes and mysterious symptoms that people develop and that doctors struggle to diagnose or treat. We give all of these ailments names: we call unexplained pigment loss “vitiligo”; perpetual tiredness is labelled “ME”; and aches and pains all over that never go away is described as “fibromyalgia”. But another way of looking at these symptoms is that they are all the result of a departure from our original blueprint for normal health. Could a lack of restorative sleep be a cause – or at least a factor in the development of these apparently unrelated illnesses? Well, it would make sense. And it would be nice if it were that simple. In reality, I doubt that it could be the only cause of vitiligo, for example (otherwise insomniacs everywhere would be losing their pigment), but there can surely be no doubt that a lack of deep, therapeutic sleep could trigger its onset and would probably aggravate an existing case. So, it follows that improving sleep is highly likely to help slow, or even reverse, vitiligo. And not just vitiligo; I suspect this is true of most conditions that develop gradually and then become chronic.
Having reached this point in my musings, I am starting to realise just how complex and wide-ranging the subject of sleep and vitiligo is likely to be. It will certainly require a lot more detective work if I am to do it any justice and I don’t want to cause you to nod off (or do I?) by turning this post into a marathon. So, at the risk of leaving you with more questions than answers at this stage, I shall pause for now and come back to the topic in Part 2, once I have had some time to… yes – you guessed it – sleep on it.
MANY VITILIGO OPPORTUNITIES
I used to think that there was one single cause of vitiligo and that one day a team of scientists somewhere would discover what it was and produce one single cure. I thought this because I am a great believer in getting to the root of problems rather than simply patching up the symptoms. I assumed that most disorders had just one root cause, if you were able to trace their development back far enough. It remains to be seen if this is true of vitiligo, but my own experience of re-pigmentation has convinced me that it is definitely worth tackling the shoots of the problem, even if we don’t yet have the technology to cut it off at the root.
If the root cause of vitiligo is a specific defective gene that makes some of us susceptible to pigment loss, as some scientists believe, then the goal must be to devise a genetically engineered cure. Such a definitive solution would render every other vitiligo therapy unnecessary and spare millions of people a lot of misery. But, until that day comes - and it may not be far off - it is important to realise that there are other viable options available to vitiligo sufferers, including therapies that can halt and reverse pigment loss at any stage of its development (as my own experience proves).
One of the worst effects of being diagnosed with vitiligo is the feeling of helplessness that comes with being told you have an “incurable disease”. This description, so commonly used by dermatologists the world over, is enough to depress even the most optimistic individual. It can feel like a life sentence, like doors closing and robbing you of control over your own future. But the fact is that you do have control and you do have choices. At their simplest, these can be boiled down to four options:
These four options are not mutually exclusive: most of us have adopted a combination of all of them at different times. But the trouble with allowing yourself to drift - or maybe even ricochet impulsively - from one to the next and back again (as I did for many years) is that it is unsettling, exhausting and gets you nowhere. Not deciding on a definite approach to your vitiligo can, in fact, amount to a decision to be a victim for the rest of your life, snatching moments of contentment between the all too frequent reminders of your deep discontent. Choosing a definite path to follow can be an empowering psychological step: one that immediately reverses the balance of power between you and your white patches, putting you back in charge.
So which of the four options would I recommend you take? The one that makes you the happiest and healthiest of course. I can’t tell you which that would be (although it is pretty obvious which one it isn’t!)
It’s your choice
Number 1 might, arguably, involve the least hassle and the greatest level of contentment, as long as you had the right temperament to achieve it. Not many people are truly able to do this. I couldn’t, so it was not an option that was open to me. (Besides, to ignore a symptom like pigment loss is to ignore the possibility that your body is trying to warn you of underlying health issues.)
Number 2 is only included in the list so that you can put a big, thick red line through it and, hopefully, never give it another moment’s thought.
Number 3 is the most common, and immediate, choice for the majority of us. If we develop symptoms we go to our doctor – it’s obvious. However, whilst a handful of doctors around the world know how to handle cases of vitiligo, the chances of finding one are remote. The only thing your doctor or dermatologist is likely to know is how to do is diagnose it (which is the one good reason for making an initial appointment).
Number 4 is – in my opinion and in my experience – the best, most effective and empowering option of all and the one most likely to bring you psychological and physical wellbeing. Taking charge of my own therapy was the best decision I ever made and has brought benefits beyond my own health and happiness. The reason I say this is because, in reality, there is a fifth option open to us: and that is to reach out to others affected by vitiligo and offer them the benefit of our own empathy and experiences - but that opportunity is more likely to present itself once you have already chosen a positive approach for your own personal vitiligo journey.
Vitiligo has been a journey of discovery
It is ironic that, during the 5 decades I suffered with widespread vitiligo, I understood very little about it, yet in the 7 years since my re-pigmentation I have absorbed massive quantities of information on the subject. No doubt, this is partly because coping with the practical and psychological difficulties of living with the condition on a day-to-day basis required time and effort which left little of either to put into research. Added to that is the fact that part of my coping strategy was to cover up my white patches and try to forget about them. So, obviously, the last thing I felt motivated to do was make a study of them. Of course, there is also the fact that publicly available information on vitiligo was almost non-existent during those years and – perhaps most significantly of all – there was no internet for the majority of that time, so resources were scarce.
It was not until my own need for answers was effectively removed by my unexpected recovery that I found I was nevertheless fascinated by the subject and passionate about gathering and sharing information on the causes, effects and treatment of vitiligo. And, if there is one thing I have learned as a result of all my hours of detective work, it is that it is complicated.
Vitiligo is complex: but this presents opportunities
Of course, almost any disease (if vitiligo can be called that) is bound to seem complicated to someone like me, given that I have no medical training. But, based on my observations, this ranks me slightly behind the experts and significantly ahead of most doctors!
Given how complex the causes and processes behind pigment loss evidently are, there is no simple way to tackle it. That’s the bad news. The good news, I have come to believe, is that – precisely because there appear to be so many layers of causality involved – this means that there are also multiple ways of interrupting the process, thereby allowing the body to start healing itself. And most of these therapeutic opportunities are available to us all because they are based on nature and some basic logic. This means that we do have the power to take control of our own therapy.
There may not be much we can do about our defective genes but there is a lot we can do to halt the domino effect of events that can lead us from that state of susceptibility, all the way through the physiological maze of cause and effect, to the appearance of white patches on our skin. And by taking action we also stand to heal ourselves of the many other symptoms (poor digestion, poor nutritional status, fatigue, allergies, autoimmune conditions, etc., etc.) that so often accompany vitiligo but are rarely picked up on in that context by medical practitioners, not mention the feeling of helplessness I referred to earlier.
I have written a lot about taking responsibility for one’s own recovery in my blog (mainly from a nutritional angle, since this proved to be the key to mine) and I shall continue to write about it in as much detail as I can. But the short version comes down to this: vitiligo - and general health - responds to the following strategies if you are willing to explore them intelligently, consistently and patiently...
You needn't give vitiligo the green light
In short, regardless of whether or not vitiligo stems ultimately from a single root cause, there are certainly multiple subsequent events that need to occur in the body in order for a susceptibility to pigment loss to become vitiligo. It is as if we have a series of traffic lights inside us that - if left on green - will speed the flow of the disease from its starting point to its final destination (“Patchyskinsville”) and all we have to do, in order for this to happen, is nothing. Alternatively, we have the option to turn as many of those green light to red as we can. Every stop light is an opportunity to interrupt the progress of the disorder. This may not alter our genetic predisposition to pigment loss but it can certainly stop it dead, turn it around and send it back where it came from. Not only that, but halting the vitiligo traffic is also likely to give priority to all the healthy processes in our system to flow as they should, meaning that our overall health will likely improve at the same time.
A FLY IN THE VITILIGO OINTMENT
Those of us who live in the north of England have to grab every opportunity to enjoy whatever sunshine we can – whenever we can. The weather pattern here over the past few years has been characterised by pleasantly warm, sunny days in spring and autumn, either side of a massively disappointing summer. So the past few weeks have found me taking every possible moment in the garden, enjoying the last of the warmth for another year. This is a great way of topping up the skin pigment in advance of the long, cold winter months ahead as an ongoing part of my protocol for keeping vitiligo at bay.
There is just one fly in the ointment – well, a lot more than one actually. Because we live close to water and surrounded by trees, we find ourselves plagued by mosquitoes and gnats during this season, clouds of them, humming and swarming around by the thousand, just waiting for the chance to feast on human blood.
These insects are typically the object of much swatting, scratching and cursing. But for anyone with a sensitive skin, they are not merely irksome; they can represent a real health hazard. Fortunately for me, the mosquitoes that frequent our garden are not the sort that carry serious diseases like malaria or dengue fever. However, their bite can still cause significant irritation which is something I try hard to avoid, given my history of vitiligo. If you have vitiligo (or any other inflammatory skin condition) it is important to be aware that physical trauma of any sort to the skin can trigger a flare up, so it makes sense to avoid not just cuts, bruises, abrasions and burns but stings and bites too.
Are insects attracted to pale skin?
Have you ever wondered why some people seem to attract #insect-bites far more than others? It would be an exaggeration to say that this question has kept me awake at nights but I’ll admit it does intrigue me. Take my mother-in-law (no jokes please) – she always ended up smothered in bites whenever she travelled anywhere that had a significant bug population, even when everyone around her remained virtually unscathed. I used to wonder if this had anything to do with the fact that she had exceptionally pale skin. Then I also noticed that, whenever I was bitten myself, it was nearly always on my #vitiligo patches. Given that I was 80% de-pigmented when my vitiligo was at its height, I suppose there is no major surprise there, statistically speaking. However, even as the number and size of my lesions dwindled, it still seemed to me that any bites I suffered were restricted to these particular hypo-pigmented areas. I even wondered if the almost translucent skin found in vitiligo patches might act like a "shop window" advertising the juicy veins below to every passing mosquito. Whatever the explanation, I was convinced there must be something about very pale skin that is irresistible to these blood-sucking critters.
Well, to my surprise, my best efforts at finding a scientific basis for this perception came up with no hard evidence at all. Whilst no one knows definitively why some people are more attractive to blood-sucking insects than others, there are a number of reasonably well established theories but none of them suggests that pale skin plays any part. It seems that the tastiest people, as far as mosquitoes are concerned, are those with type O blood, those who sweat or breathe more heavily than others, pregnant women and anyone who has a raised body temperature or has recently consumed alcohol.
Genetics are thought to be a factor, meaning that susceptibility probably runs in families, but there is very little evidence that colour plays a role, except that mosquitoes are apparently more likely to bite you if you are wearing dark coloured clothing. If this is true – and if it holds true for dark skin, as well as dark clothing - that would seem to fly (no pun intended) in the face of my own observations… unless, of course, bugs really do prefer fair-skinned victims and dark clothing simply serves to make human skin look paler by comparison(?).
Perhaps my perception is due to the fact that bite marks just look more conspicuous on fair skin than they do on darker complexions. It is certainly true that sensitive skins react more severely to insect bites, producing larger, angrier-looking welts and more histamine, resulting in more itching and inflammation and this is the last thing you need if you suffer from vitiligo, especially as scratching can lead to further de-pigmentation.
Choosing a safe and effective bug repellent
Insect repellents containing DEET are generally thought to provide the most reliable protection but the chemical ingredients contained in these products can prove to be just as inflammatory to vitiligo sufferers as being bitten. So the burning question is: are there any natural alternatives that actually work?
Some people claim that garlic is equally loathed by these tiny vampires as by their mythical cousins. But I suspect that gobbling massive quantities of this malodorous condiment, or rubbing it on one's skin, would succeed in keeping more than just the insect population at arm's length.
Some people maintain that vitamin B12 wards off mosquitoes but others claim that this theory has been discredited. (Although, if there were some truth in this, would the fact that most vitiligo sufferers are deficient in B12 offer an explanation as to why insects seem to favour de-pigmented skin? Maybe.)
Neem oil is significantly effective at repelling bugs but has a very strange odour if used in suitably high concentrations. This can mean that the more repulsive bugs find it, the more repulsive we humans find it too! Mixing it at a ratio of 1:10 with coconut oil makes it less pungent but this reduces its effectiveness and it can be a bit messy to concoct and to apply.
Citronella oil is probably the best known natural insect repellent and is a popular ingredient in outdoor candles for that purpose. However, it does not work as effectively on skin as its non-natural, DEET-based counterparts and it evaporates so quickly that it only offers very short-term protection. Worse still, it is a known skin sensitiser that can cause allergic reactions.
Citriodiol, on the other hand, appears to tick all the boxes. Also known as Oil of Lemon Eucalyptus, Citriodiol is a natural ingredient that has been proven to be just as effective at repelling insects as the best-performing DEET products, as well as being safe for use on children as young as 6. And, whilst it causes bugs to hold their nose and run for cover, it actually has a rather pleasant menthol smell, meaning it is unlikely to result in anyone of the human variety having to do the same.
Mosi-guard citriodiol-based natural insect repllent is available in either spray, stick or roll-on.
Investigating the mystery of vitiligo
I don’t remember exactly when my addiction to detective stories began. It might have been back in the 1970s, when I first started watching the disarming and dishevelled homicide detective Lt. Columbo relentlessly hunting down his prime suspects with “just one more question” until they were finally forced into revealing themselves as the killer. Or it might date all the way back to endless childhood hours engrossed in the latest thrilling adventures of Enid Blyton’s Famous Five or Secret Seven. Nowadays I am a sucker for a good episode of Miss Marple, Poirot or, my guiltiest pleasure of all, Midsomer Murders. And I always have a ready supply of whodunnits on my Kindle as well as on my book shelf.
My preoccupation with murder mysteries may sound a little morbid but, in my defence, it is not the blood and guts that draw me to the genre. It is the intriguing plots and the challenge of piecing together a seemingly impenetrable puzzle. Of course, the pleasure in most crime dramas comes from looking for clues and motives, spotting red herrings and attempting to solve the mystery ourselves. The enjoyment in an episode of Columbo, on the other hand, comes from watching someone else put the pieces together, whilst we – the audience – already know who the killer was and how they did it.
The puzzle of vitiligo
I find the mystery of vitiligo every bit as challenging and absorbing as those fictional tales but I have not always felt this way. When I was still in the midst of my own drama – wondering why on earth my skin kept developing new white spots, dreading when and where the next one would appear and hoping and praying for a cure - or anything at all that would help even a little – I was too deeply affected by it all to want to spend too much time dwelling on it. It was easier to cover it up and try not to think too deeply about it. But once my re-pigmentation was in full swing it was as if I was watching another episode of Columbo, knowing how the story would end. The solution to the mystery was in plain sight and so I could relax and enjoy watching the rest of the story play out. Suddenly I didn’t mind focussing my attention on what was happening to me because it was no longer depressing. In fact, it was thrilling to see the colour returning to my skin and I became fascinated by the process. This was when I began to read everything I could find on the subject of #vitiligo in an attempt to understand as much as possible about what causes it, ways of treating it and ways of coping with it.
What I have learned (and am still very much in the process of learning) is that, unlike the fictional detectives who solve every crime, catch every villain and tie up every loose end, a vitiligo detective’s results are not as clear cut. It seems there are always differing medical opinions, conflicting theories, inconclusive research results and – most disturbing of all - deliberately misleading and bogus claims to sort through before you can come to any definite conclusions on the subject. But I suppose this just goes to show that vitiligo is not a work of fiction. It is real life and affects different people in different ways. It is an ongoing investigation that, in all probability, will eventually culminate in a complex set of solutions, reflecting the fact that it is a complex condition.
The most effective treatment
Obviously - since there is no official cure for vitiligo yet - this is a mystery that is still under investigation by researchers and sufferers alike. It is a detective story that looks set to run for quite some time. But everything I have learned, and experienced, so far convinces me that nutritional deficiencies play a central role, maybe the central role, in the development of vitiligo and that correcting those deficiencies is currently the most effective way to reverse it and keep it at bay. Saying this may not be quite the same thing as solving the mystery and closing the case but it has certainly made a world of difference to me - and to many others who have adopted the same, or a similar, approach to their treatment.
Just why a significant minority of the world's population seemingly randomly lose patches of their skin colour is evidently a complicated puzzle that is still in the process of being solved (though I am confident it will be eventually). Until it is, I shall continue to be a vitiligo detective and hunt down every fascinating clue I can find. I shall, like the good lieutenant, keep on asking “just one more question” and keep passing on any potentially useful answers I come across in this blog. However, much as I enjoy researching and writing it, I look forward to the day when the only mysteries I try to unravel are fictional ones because vitiligo will have become a straightforward condition to cure and this blog will have lost its relevance.
Artificial versus natural sun protecion
After a couple of weeks of blue skies and mild temperatures (most unusual for March / April in the north of England), this taste of things to come has made me impatient for the long, warm days of summer. That said, sunny conditions are never a certainty in our neck of the woods, but I live in hope. So, with this in mind, I am going to be optimistic (literally looking on the bright side). I am going to risk putting a jinx on the British summer by broaching the deceptively harmless subject of #sunglasses.
Most of us own at least one pair of these practical yet stylish accessories at any one time and many of us expend considerable time and money on selecting them. They can be just as much a fashion statement as our garments and hair style and a top quality pair can cost a lot more than an entire outfit. In fact, many people regard their "sunnies" as a vital component of their seasonal wardrobe, as important to their summer look as sporting sun-bronzed skin. But, whilst a cool pair of shades can, undeniably, set off a golden tan to perfection, some people believe they may also sabotage your efforts to develop one in the first place. In short, there is a hotly debated (no pun intended) theory that wearing sunglasses for too long could cause sunburn by interfering with the body's natural tanning process. For most people, this possibility is nothing more than a quirky and obscure snippet to be filed away as a potential party piece, should you ever need it. But for anyone with #vitiligo, its possible implications might be much more significant.
Our love-hate relationship with the sun
Extensive reading on the pigmentation process, coupled with my own experience of vitiligo recovery, have convinced me that #sunshine is a bit like food. It is one of life’s great pleasures and is absolutely essential to our survival. But it needs to be approached thoughtfully and taken in moderation. This advice, of course, applies to every living thing, but more especially to those with a pigmentation disorder. Through personal experience, I have learned that getting too much sun can be as counterproductive as too little.
So how does the pigmentation process actually work and why do some claim wearing sunglasses interferes with it?
Well, first of all, skin pigment is not just for decoration: it exists for a practical reason. It is the body’s way of protecting itself against UV damage. A person with normal skin produces a certain amount of melanin whether they are exposed to sunshine or not. The amount of melanin present in their skin determines how fair or deep their natural colouring is. Our natural skin colour is determined by our genes and exists in order to provide protection to the deeper layers of the skin. As such, it tends to give a clue as to where our ancestors came from: peoples who lived nearer the equator for generations generally have more melanin and darker skin than those who lived far away from the equator where there is much less sunshine and therefore less need of UV protection.
When the skin is exposed to sunshine melanin production increases further to provide even more protection. This is what we call a sun tan. Deeper skin tones usually tan easily because they have more melanin to start with. Fairer skins tend to burn if sun exposure is too intense or too long because they have relatively little melanin to start with and can’t make sufficient quantities fast enough to keep pace with the UV damage. This is why paler people need to sunbathe more carefully and more gradually if they want to avoid looking like a boiled lobster by the end of the first warm day of summer.
the eyes may play a part in tanning
The question of whether or not wearing sunglasses interferes with the tanning process seems to hinge on exactly how the mechanism by which this increase in melanin production is actually triggered. The claim is certainly not as crazy as it might at first sound. The logic goes that the tanning process is largely triggered via the eyes. The pigmentation process is regulated by our hormones. UV exposure stimulates the pituitary gland, located at the base of our brain close to the optic nerves, into producing MSH (Melanin Stimulating Hormone) into our bloodstream. It is this hormone that then causes the pigment producing cells (melanocytes) to produce a protective tan. The connection between the pituitary gland and the optic nerve is significant in this concept because it is the pituitary gland’s ability to sense light via the eyes that triggers the whole process. Therefore, filtering out UV light with sunglasses should, in theory, impair the body's ability to protect the skin against sunburn. This also has implications for the risk of developing skin cancer.
If this is true, we would all be well advised to minimise our use of sunglasses when we are in strong sunlight. But, of course, the irony of this is that this is the very time when we tend to need them. Not only is squinting in bright light uncomfortable and likely to produce wrinkles but excessive exposure without the appropriate eye protection can cause eye damage, including cataracts.
So are sunglasses good or bad?
Before you throw out your treasured Ray-Bans, there are plenty of opposing views on this topic which also appear to make sense if we accept that the trigger for the tanning process is not wholly reliant on the optic nerves. This theory says that melanin is produced in response to detecting UV light on the skin itself and therefore wearing sunglasses should make little or no difference to tanning. But then, it begs the question: does wearing a sunscreen trick the body into thinking the UV light is less intense than it really is. If this is true, then the risk of burning once your SPF product has worn or washed off is probably higher than if you hadn't applied one in the first place.
From what I have read so far on this subject, there is no definite consensus among experts. But, as ever, intuition tells me that common sense and moderation are the best guides as to how reliant we should be on sun protection in general. And I have some tips of my own for others who have vitiligo and are wondering how to approach this whole issue.
sun protection for vitiligo, yes or no?
The therapeutic value of sunlight is one thing that is beyond question. Without it we would die. And in the context of vitiligo (and many other skin conditions) UV therapy is the cornerstone of most effective treatments. It was certainly a key part of my own success story. On the other hand, sunburn is one of the events that is known to trigger de-pigmentation in those who have a susceptibility to it. Similarly, it seems that there is at least a fair chance that wearing sunglasses and sunscreens could be counterproductive since some credible theories exists to suggest they hinder the body's natural detection and defence system against the dangers posed by UV radiation.
The answer to this dilemma, it seems to me, is to ensure we get regular, but moderate, exposure to sunshine. It seems that, in the case of sunglasses, it is an over-reliance on them (i.e. wearing them, uninterrupted, for prolonged periods of time) that is likely to be a problem. So, my view is that it is best to save your sunglasses (good quality ones, please) for the times you really need them, like when the sun is causing you real discomfort or when driving for example. Squinting may cause a few wrinkles around the eyes (laughter lines, I mean) but personally I don't mind risking the odd one or two if it means my skin continues to produce healthy pigment. Wearing them throughout the summer might be tempting if you suffer from vitiligo "Panda Eyes" (as I used to call mine) but in my opinion it is unlikely your eye area will ever re-pigment if you constantly keep it hidden from the sun.
And, when it comes to sunscreens, I prefer not to block the healing rays of the sun by using these myself unless I know that I am going to be exposed to intense UV for prolonged periods of time with no other means of protection. On those occasions, I use as natural a product as I can find (this is my current favourite sun cream) because products containing harsh chemicals can be as bad for vitiligo - or worse - than sunburn itself.
In short, sunshine is a two edged sword for people with vitiligo. But I am convinced that it is far more beneficial than it is harmful, as long as we apply common sense and moderation to our relationship with it.
You may need to take action before you re-pigment!
Combating a stubborn and complex condition like #vitiligo is not easy. It is not simply a matter of asking your family doctor for a prescription. Not even your dermatologist can wave a magic wand and make the white patches on your skin disappear. Conventional medicine still offers woefully little in the way of comfort or real, lasting value to vitiligo patients. If you are determined to beat this particular skin disorder you have to be willing to reject the well-worn myths perpetuated by the medical profession (i.e. that the impact is purely cosmetic and that not much can be done, apart from using Protopic and, maybe, a course of UV therapy). Whatever the scientific, financial or political reasons may be for this widespread ignorance and indifference, the fact is that most doctors are not ready, willing or even interested in helping you to beat this condition. So, if you want to improve it, you have to be prepared to do some research of your own and take responsibility for devising your own therapy. And that takes guts. Fortunately, guts are exactly what I am going to discuss in this blog post… because it is my long-held belief that guts are not only the solution to your problem but they are also where you will find its source!
It takes guts to restore intestinal balance
It is ironic that a “skin disease” that is often seen as having purely visual impact should actually originate in areas of our body that cannot be seen at all when we look in the mirror. But all the evidence I can find in my vitiligo research, and my own experience, tell me that this is, in fact, the case. I am convinced, as are many researchers and vitiligo sufferers alike, that the causes of this condition lie deep in the bowels of… well, deep in our gut!
I have gradually come to realise that our digestive system is, in many ways, as complex and influential as our brain. Having thought, for years, that the #digestive system was a fairly simple piece of plumbing, I am now aware that it is, in fact, a highly sophisticated ecosystem (a “second brain” even) which must be kept in balance in order to maintain good health.
When this system works as it should, the entire body functions as nature intended: it receives the nutrition it requires for all of its physiological processes whilst harmful toxins, waste and pathogens are either eliminated or neutralised. But, as in any ecosystem, a disturbance to the natural balance can produce unwanted effects that may appear gradually at first, but then gain momentum as a process of cause and effect creates an ever-worsening vicious cycle. The longer the cycle is allowed to continue, the more of the body's processes are impacted and the more symptoms and syndromes emerge. As the body's largest organ and an important means of elimination of toxins from the body, the skin is often an early indicator of internal problems. It is my belief that the patchy pigment loss that characterises vitiligo is a symptom of such problems and that the clusters of other chronic symptoms and related illnesses that are so often associated with vitiligo are also a consequence of the same gut-based imbalances.
So, what are the events that form this vicious cycle? And which event is the ultimate root cause of it? Well, it probably doesn't matter too much which came first – the important thing is to identify the key issues and deal with as many of them as possible in a bid to interrupt the negative spiral and restore healthy balance. But, if I had to start somewhere, I would say the most likely prime mover in the disease process would be insufficient #stomach-acid.
Low stomach acid leads to chronic ill health
I have blogged before about the link between hypochlorhydria (low stomach acid) and vitiligo. Some people are born with too little stomach acid and are not able to produce enough to properly digest their food. The internal problems that this causes may or may not be apparent during early childhood. But the compound effect of inefficient digestion over the longer term inevitably results in symptoms at some point in time. Other people may have sufficient stomach acid when they are young but, since most people experience declining levels as they age, problems may occur later in life. The logic goes that low stomach acid results in incomplete digestion of food, resulting in nutritional deficiencies and “leaky gut” and that pigment loss is just one of many chronic conditions that eventually follow.
It seems that low stomach acid is a condition that, of itself, tends to become a vicious cycle. Evidently, it causes mineral deficiencies which, in turn, raise the acidity of the blood. Acidic blood further reduces mineral levels and lowers stomach acid even more. (And, God forbid that you should then take antacids for the indigestion symptoms that often accompany hypochlorhydria because this will make the cycle even more vicious by lowering what little stomach acid you still have.)
So, this is why, when low levels of stomach acid go unchecked, they can set in motion a downward spiral in the body's ability to absorb nutrition and eliminate waste. There are certainly a whole host of other negative repercussions from this, which (as a non-medic) I will lump together under the very broad term “inflammation”, which includes allergic and autoimmune responses.
The Candid truth about gut flora
Another factor in the vicious cycle of inflammation is undoubtedly Candida Albicans. Most of us have heard of it but we may not have considered its possible involvement in vitiligo. #Candida is a fungus (or yeast) that lives in the digestive tract where it aids normal digestion and nutrient absorption. But it is a part of our internal ecosystem that can easily grow out of control and severely upset its delicate balance. When this happens it is called candidiasis or COS (Candida Overgrowth Syndrome). A person with insufficient stomach acid is highly unlikely to be able to keep the growth of this fungus under control and this can result in damage to the intestinal lining, further contributing to the development of “Leaky Gut” (or intestinal permeability) and lending extra momentum to the whole vicious cycle of digestive impairment and its consequences.
As with low stomach acid, some people may be born with a Candida overgrowth but most of us develop it, to a greater or lesser extent, largely due to a diet that is too high in sugars and starch. Most people can bring it under control by improving their diet and taking a course of probiotics. But, if you have vitiligo, you are very likely to lack sufficient stomach acid to kill off excess fungal organisms and other pathogens and viruses living in your digestive tract. So the problem can be more extreme and more persistent and you may need to take probiotics on an ongoing basis.
Melanocytes are the first line of defence against Candida Albicans
Not only are we more susceptible than the average person to having the balance of our gut hi-jacked in this way, but there is some evidence to suggest that vitiligo sufferers also have fewer defences to fight it. Naturally, the longer the vicious cycle is allowed to continue, the weaker our defences are likely to be anyway. But research has found that melanocytes form the first line of defence against Candida Albicans, which poses the question (in my simple mind, anyway): does a lack of pigment lower our defences even further to this fungus?Vitiligo is known to affect the mucous membrane as well as our outer skin, so it seems logical to assume that vitiligo sufferers would have fewer functioning melanocytes in their gut than the norm.
Having just re-read this blog so far, I realise how alarmist it may sound. So I apologise if it has you clutching your stomach with one hand, whilst frantically googling “how to rid my body of killer fungi” with the other. My aim is not to overstate the case or to spread panic. If you are affected by the type of internal imbalance I have described, rest assured that it has taken time to develop (decades, in most cases) - and has not killed you yet! The good news is that it can be corrected, although it may take a little time and perseverance. But then, those are two of the requirements that you will find in every effective vitiligo treatment anyway.
The downward spiral of poor digestion and poor health that I have described may sound alarming, especially as a number of factors are involved and each of these, in itself, seems to be a vicious cycle within another vicious cycle. So how can we hope to halt the decline, never mind turn it around?
Keep calm and carry on healing yourself!
First of all, it is not necessary to have a perfect understanding of what is going on in order to correct it. After all, I didn't know any of this stuff seven years ago when I tried out a nutritional protocol on the off-chance it might work. I now understand a lot more about why it did work (and also why it improved my digestive symptoms too). But my ignorance at the time didn't prevent it from working. And, second of all, tackling the individual factors involved becomes much simpler when you look at them one at a time. So, let's do that now.
There are tests that can confirm whether or not you suffer from hypochlorhydria but simply checking out the symptoms online will probably give you a pretty good clue. If you are still not sure, then following the recommended HCl test will enable you to discover, by trial and error, whether or not you need to supplement with hydrochloric acid to help you digest your food. If you have a significant lack of stomach acid you will benefit from taking Betaine HCl and Pepsin with meals to boost your levels. Otherwise, just a diet that promotes stomach acid production may be sufficient.
The pH levels of the human body can be a really confusing subject, especially when it comes to deciding what we should eat to promote good health. One of the confusing aspects is that different parts of the body need different levels of acidity. As we know, the stomach requires a very high level of acidity in order to break down food, whereas the duodenum (which is where food goes immediately after leaving the stomach) needs an alkaline environment. The blood should be slightly alkaline too.
The other confusing thing is that foods are often wrongly described as “acid” or “alkalising” and this can be misleading. What our body needs is foods that help to promote healthy levels of stomach acid but also have an alkalising effect on the rest of our body. For example, citrus fruits and cider vinegar will help with acid production in the stomach but, once digested, they actually have an alkalising effect on the body, which seems quite counterintuitive.
So, how do we choose the right foods to satisfy all these different requirements? How do we know which foods are acid and which are alkaline? Luckily, most of the foods that we already know are good for us will help our digestive system to function properly: fresh vegetables and fruits, organic fish and meats will all do this. By eating along the lines of the so-called Cave-Man or “Paleo” diet consisting of exactly these foods (or at least limiting other foods like grains, dairy and all processed foods) it would be hard to go wrong, even if you don't understand all the science behind it. (However, a list of foods that are alkalising can be helpful for reference.)
Since becoming aware of all this information I have adopted a mainly Paleo diet myself and feel better for it (and losing some unwanted weight has been a bonus). But it is obvious to me now that my diet was sadly lacking until relatively recently, so this change in my eating habits cannot have been a factor in my recovery. I strongly suspect that taking daily doses of Five a Day greenfoods was the thing that compensated for deficiencies in my diet back then. I always think of this supplement as being the nutritional equivalent of eating a mountain of organic, leafy green vegetables every day, providing high levels of easily-digestible alkalising nutrition that I would not otherwise be able to eat in sufficient quantity without bursting!
Because low stomach acid and poor diet are two of the key factors in Candida overgrowth, following the same guidelines above for addressing acid imbalances will automatically help to combat it. In my own case, I eat a mainly alkalising, nutritious diet, take Betaine HCl with large meals when necessary and I take two doses of Five a Day daily. Every so often, I also take a course of pro-biotics if I suspect a yeast infection - or just as a precaution. (Probiotics for young children are also available.) But the healthy bacteria content of Five a Day (Lactobacillus Acidophilus and Lactobacillus Bifidus) seems to be sufficient for my needs the rest of the time.
The other factor that can lead to candidiasis is a lack of digestive enzymes. So, supplementing with these also helps to ensure better nutritional absorption.
I entitled this blog “Low stomach acid, Candida and vitiligo” so I shall finish off with this third component – my main reason for writing the blog. I decided to write about digestive issues, in the context of vitiligo, because there are a lot of vitiligo sufferers out there trying all kinds of different treatments to regain their skin colour. Many are not getting the results they want, quite possibly because they have untreated digestive issues that are sabotaging their efforts by preventing or reversing their recovery.
I have had “tummy troubles” all my life and, until the past few years, never made a mental connection between these and my vitiligo. But now that I analyse it, my recovery makes much more sense. At first, my re-pigmentation, using nutritional supplements, just seemed like a lucky fluke. But in fact, the supplements I used worked on both my gastric problems and on my skin's ability to make pigment. I believe that both components of the treatment were equally important. In fact, I doubt that the Boost tanning supplement that triggered by re-pigmentation would have had a chance to work as well as it did (or even at all) if I had not been helping my digestive system at the same time by also taking Five a Day green food.
It seems obvious to me that most of the western world is affected by poor digestion thanks to the average modern diet (although many people either have no symptoms yet, or simply ignore them and pop another antacid). But if you have vitiligo, there is statistically a much higher chance of your having a deficiency of stomach acid and of suffering from the vicious cycle that this sets in motion. Unbelievably – shockingly, in my opinion – very few doctors or dermatologists will ever mention such things. They continue to tell patients that vitiligo is incurable, or else they try to improve it with creams and drugs that only treat the outside, instead of recognising that the cause is internal.
So, my message to you, if you are looking for answers, is to take charge of your own recovery because you are the only person who can do this on a daily basis. Don't let digestive issues interfere with your efforts to re-pigment. Find out if you have low levels of stomach acid. If you do, then follow the recommendations above (or do some more research yourself). Find out if you have a Candida problem and take action to bring it under control. If you can do this, then I am convinced that whatever vitiligo treatment you choose to use will stand a hugely increased chance of working, and working long-term, just as mine has.
In closing, I'm sure you have sometimes heard courage referred to as “Intestinal fortitude”. Well, it does take some guts to manage your own recovery in the face of a lack of effective medical support. But if you can literally build up your intestinal fortitude (physiologically, as well as psychologically), your courage is much more likely to be rewarded with lots of healthy, new pigment!
Why cold weather may cause pigment loss
Just three weeks ago I was waxing lyrical about the golden beauty of the countryside in Autumn. But the weather reports this week have been warning of snow and my daily walks over the past few days have seen me swap a thin fleece for my warmest jacket, scarf, hat and gloves as the slide from one season into the next picks up pace.
I recognise that not all readers of this blog live in countries that have cold seasons, but I know that a lot do. And, whilst our Antipodean #vitiligo-friends are gearing up for their Summer and all the difficulties that this entails for people with skin that does not tan normally, we in the UK (and the rest of northern Europe and North America) are about to be plunged into a prolonged period of cold weather.
I used to look forward to Winter
I can remember how I used to feel at this time of year B.R. (Before Re-pigmentation!). As the first frosts started to bite I used to breathe a sigh of relief that, for the coming few months at least, I would no longer have to mess about with fake tans, a full face of make-up and impossible decisions about what clothes I could wear to keep cool and fashionable without exposing my white patches. Life was about to become less complicated and less stressful. And the greatest luxury of all was that I could almost completely forget about my vitiligo. I could behave and feel the same as everyone else around me. It was as if the Summer had left me exhausted from fretting and focusing on my skin all the time and now, finally, there would be some respite from my constant state of awareness of my condition. Nowadays, I am sad to see the end of Summer and find myself looking forward to taking a Winter break somewhere hot because regaining my normal colour has changed everything.
So, if you have vitiligo and live in the northern hemisphere, the good news is that you are about to be able to hide your skin under layers of fabric and the decreased levels of UV will probably also lessen the contrast between your normal skin and the vitiligo patches as the weeks go by. That's the good news...
Can cold weather cause vitiligo to spread?
But, on the other side of the coin, what I also remember experiencing (B.R.) was anxiety as I emerged from “hibernation” the following Spring, wondering whether new vitiligo lesions would have developed below the surface, waiting to appear as soon as I exposed any flesh to the elements and dreading the intrusion on my life once again of this condition that would continue to preoccupy my every moment. More often than not, I discovered at this stage that my vitiligo had indeed spread. It was not always apparent until I had had some sun exposure but it seemed that I started every Spring/Summer with less pigment than I had ended with the previous Autumn. So, does this mean that the winter is in some way harmful for vitiligo sufferers? And, if so, why?
I have blogged before on the question of how much sunshine is too much and concluded that UV exposure is an important component of every successful vitiligo treatment I have ever come across (including my own) but that excessive exposure, resulting in sunburn, often causes further pigment loss. So it is a question of moderation. Of course, it is simple enough to be sensible about how much sun exposure we choose to get during the Summer (well, perhaps that's debatable if you live in England) but many of us have little choice during the Winter - unless we have access to a UV device. We are simply stuck with the weather we are given. This made me wonder if there is a difference between the incidence or severity of vitiligo in different parts of the world based on the amount of UV they are exposed to.
Vitiligo is less severe in sunny climates
The evidence I was able to find suggests that there is no variation in the geographical distribution of vitiligo around the world but that vitiligo sufferers who live near the equator tend to have less widespread lesions than those who live further away from it.
Since the most obvious common denominator between countries near the equator is their consistenly sunny climate, this would seem to be in line with my belief that regular sun exposure is good for controlling the condition.
It is unfortunate for those of us who live in countries with distinct seasons that we are deprived of significant sunshine for several months at a time. For us, it is either feast or famine, when it comes to UV exposure. And, knowing that my recovery involved regular sun exposure during the Summer and phototherapy through the Winter, instinct tells me that long-term fluctuations in UV are probably counterproductive for anyone wanting to restore and keep lost pigment. I'm inclined to think that the cool, dull conditions that interrupt our exposure to the sun could actually be a major reason why many vitiligo sufferers living far away from the equator see their pigment loss spread each year by comparison to their equatorial counterparts.
It is not difficult to understand why sunshine (in sensible moderation) is good for vitiligo. Everyone knows that UV light stimulates the production of vitamin D (in which vitiligo sufferer's tend to be deficient) and that UV light is what triggers the tanning process. But the fact that a lack of UV – as experienced during Winter - does the opposite is perhaps not something we think much about, even if it is entirely logical.
In a sense, the long, dark Winter after the bright Summer months is similar to night-time after the day. The relative darkness reduces levels of the hormone serotonin in the brain, raises levels of melatonin and reduces our production of Melanocyte-Stimulating Hormones (MSH). These hormonal changes are usually kept in balance in the context of day and night. Serotonin is needed, amongst many other functions, to wake us up and melatonin helps send us to sleep. But a virtual night-time that lasts several months (i.e. Winter) may well upset the balance of hormones in the pituitary gland causing some people to suffer from Seasonal Affective Disorder, or SAD, some to lack vitamin D and some to lose pigment.
"Hibernation" can make us compLacent
Winter also presents another, unrelated, danger to the vitiligo sufferer and that is that we can be lulled into forgetting about our skin to the extent that we stop being careful about avoiding potential vitiligo triggers.
One of the first things that can go out the window is a healthy diet. It's easy to eat like a caveman and consume salads, fresh vegetables and unprocessed meats in the Summer but when it's snowing outside and dark by 4pm we find ourselves craving comfort foods and drinks, many of which are low in key nutrients (often ones that we already lack) and many of which contain ingredients that may aggravate the digestive system, causing vitiligo to spread.
It is also a time of year when we reach for heavier garments with necklines and cuffs that can increase friction to the skin and darker coloured fabrics containing stronger dyes, which typically contain a variety of chemicals that can potentially trigger de-pigmentation in susceptible individuals.
What I am saying is that, whilst the colder weather can be a wonderful opportunity for people with vitiligo to forget their troubles and simply get on with life (which is clearly a very positive thing to do), I believe that it is a mistake to take our eye off the ball altogether. I have come to the conclusion that it is just as important during this season to stick with any treatments and protocols that have proved beneficial during the rest of the year and, ideally, to find a way to include UV exposure if at all possible. So here's to either living somewhere that has winter sunshine, owning a UV lamp or – best of all – taking lots of sunny vacations!
But, above all else, we know that stressing over all of this can also be counterproductive. So, whatever else you do to keep your vitiligo in check, my advice is to...
... LOOK AFTER YOUR SKIN THIS WINTER!
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.
A vitiligo blogger since 2011. My name is Caroline. I had vitiligo for nearly 50 years before finding an effective treatment. I created this blog to share my experiences with others affected by this skin condition.