Damage to pigment cells is not permanent
Vitiligo is something none of us asks for and most of us would rather live without. Of course, there are exceptions to every rule. I was surprised the other day to read about Bashir Aziz, from London who has so successfully come to terms with his vitiligo that he is actually disappointed to discover that he is spontaneously re-pigmenting! His attitude is a startling demonstration that, whilst we do not have any choice as to whether or not we develop a condition like vitiligo, we do have a choice as to how we respond to it.
Nevertheless, the struggle to overcome the emotional response to losing our skin colour can prove too much for many of us, in spite of our best efforts. Personally, I never came to terms with my mine (unless feeling resigned to something counts as coming to terms with it). So I was completely thrilled and grateful beyond my wildest dreams when I re-pigmented. And I am utterly delighted whenever I hear of others experiencing the same thing because I know what a life-changing experience it is.
Vitiligo can be especially hard on parents
Knowing how deeply disturbing and depressing the inexplicable and piecemeal loss of one’s natural skin colour can be, my heart goes out to everyone affected by this experience, and especially to parents whose children may develop the disorder. I often receive emails from mothers and fathers who typically express fears that their children will either inherit vitiligo from them or, if their child already has the condition, they worry that it will lead to psychological or social difficulties in the future. Their concerns that their children will be miserable as a result - and their sense of frustration and helplessness at the lack of a cure - is often heartbreaking. However, as I always tell those parents who contact me, I truly believe that there have never been as many reasons to be optimistic about the future of vitiligo sufferers as there are today. This skin condition may have been minimised and largely overlooked by the medical and scientific community for generations but I am glad to say that this state of affairs is finally changing.
Latest vitiligo research video
I recently came across an exciting article by Erika Page on a website called Living Dappled. Erika has vitiligo and is clearly very committed to helping others with the condition by providing encouragement and information, particularly aimed at supporting female sufferers. As part of this project she has embarked on a series of video interviews with #vitiligo-experts in which she asks them to share 5 points of interest. The first of these interviews was with Dr John Harris, Director of the University of Massachusetts Vitiligo Clinic and Research Center. The live video interview gives a fascinating and immensely encouraging insight into the vitiligo research being done there. You can read Erika's summary of Dr Harris' five points - and view the whole video - on this page.
"Vitiligo is fully reversible"
Having watched the interview with Dr Harris, I felt encouraged on a number of levels. For a start, it is unusual to hear a scientist speak about a complex field of research in such clear and simple language. It is obvious that his commitment to finding effective treatments for vitiligo is his passion, not just a job. And I found it refreshing that he is evidently so in tune with the patient’s point of view, which I suppose is due to the fact that he is a clinical dermatologist as well as a research scientist, so he gets to see first hand how vitiligo affects people on a human level.
Just knowing that serious #vitiligo-research is actually going on and has identified the key pathway involved in the development of vitiligo (a combination of autoimmunity and abnormal melanocytes) is encouraging. And realising that research has progressed to a stage where clinical trials using drugs designed to "switch off" the autoimmune pathway that attacks melanocytes - are well underway is reassuring. Add to that the fact that a number of pharmaceutical companies are finally showing an interest in funding vitiligo research and you realise that these are significant strides in the direction of producing a long-awaited cure.
But, for me, the most exciting moment in the whole interview was Dr Harris’ categorical statement that, unlike the cellular damage associated with certain other autoimmune conditions, the damage done to pigment cells in vitiligo is fully reversible. The information itself was not the cause of my excitement (because, after all, my own re-pigmentation after 50 years clearly demonstrates the truth of his statement). What really made me sit up and rewind the video a couple of times was hearing someone with his professional credibility confirm it publicly. For generations, too many doctors the world over have repeated a mantra of doom and gloom: they have told countless thousands of patients that their pigment cells are dead, that white patches never recover, that there are no cures and that treatments aren’t worth trying because they don’t work. Well, now let’s hope these doctors will start to be a little more open-minded and constructive in their response to vitiligo. And, if some of them are slow to bring their attitude into line with current developments, perhaps patients themselves will at least be in a stronger position to educate them on the subject!
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 gratitude can promote health and beauty
How many times in your life have you wished – and been wished in return – a happy, healthy and prosperous new year?
I know that, for some people – and I used to be one of them – such wishes can seem irrelevant when all you really want is to feel comfortable in your own skin. During the decades before my recovery, I can remember thinking that I would be willing to trade every one of my new year hopes, dreams and wishes for just a single one: to be able to look at myself in the mirror and see a whole human being, not the vitiligo “jigsaw puzzle person” that I had become.
Vitiligo had turned me into a jigsaw puzzle version of myself
I didn’t constantly dwell on such thoughts, of course. Usually, I pushed them to the back of my mind and got on with life as most of us do when we are faced with no alternative. I have always been a predominantly positive thinker and I tried to maintain a cheerful attitude, reminding myself that there are very many worse afflictions in life than having vitiligo. And whenever I found my mood at odds with this logic (and, let’s face it, depression has precious little to do with logic) I looked for strategies to avoid sinking into a pit of self-pity. One of the most helpful and uplifting of these was to keep a “gratitude journal” in which I wrote down 5 things every night before going to sleep for which I felt truly grateful. This helped a lot, and it is a discipline I can heartily recommend to everyone, whether they are depressed or not and whether they have vitiligo or not. It restores some much-needed perspective, feeds the spirit and, in the process, lets our inner beauty shine through. This, of course, is far more important than the colour of our skin, be it black, white, patchy or turquoise with yellow polka-dots.
How an attitude of gratitude changed my outlook
The lessons I learned from keeping my journal and counting my blessings were priceless (and, of course, I dutifully added these to my journal too). They improved my outlook on life and, I believe, made me a better and healthier person, but I still longed for a vitiligo cure. You see, I believe that, whilst it is both admirable and practical to accept the adversities of life that we cannot change, it is only natural to want to change them if it is at all within our power. And, as it turned out, reversing vitiligo was within my power. It just took me 50 years to find that out.
In spite of the general mood of pessimism and hopelessness that so often seems to surround vitiligo, I always believed that a #cure would one day be found. And, until that day came, I sometimes fantasised (and occasionally, literally, dreamed) that I would wake up one morning to find my skin restored to its original, even colour. Well, no absolute cure has emerged yet (although I am still convinced it is only a matter of time) but my fantasies did eventually come true. I didn’t wake up one morning to find my vitiligo patches gone. It took 18 months or so. But, strangely enough, seeing my pigment return gradually was probably even more exciting than if it had happened overnight.
The first few freckles would have looked insignificant to anyone else but, to me, they were nothing short of miraculous. In fact, I didn’t believe they were real at first. I thought they must have been the remains of a self-tanning cream that I sometimes used to use for camouflage. So I applied an exfoliating scrub (which I don’t recommend, by the way, as any kind of abrasion can aggravate vitiligo) in a fruitless attempt to remove the little brown dots. Then it dawned on me that the marks were, in fact, pigment! That realisation is a moment I shall never forget and the whole process of #re-pigmentation that followed was a journey that thrilled and energised me in a way that no one else could possibly understand unless they also had vitiligo or maybe a comparable condition. The emotions I experienced during that time – and which I still feel today – would fill a whole library of gratitude journals :)
You never know what new hope tomorrow will bring
It’s strange to think, writing this now in January 2018, that this time 8 years ago I was wishing – and being wished – a happy, healthy and prosperous new year at a time when my vitiligo covered 80% of my body. I don’t remember if I was feeling particularly despondent at the time. I don’t think I was any more than usual. But it would have been on my mind, off and on, as it was for most of my life. And I certainly would not have been expecting the year 2010 to bring about any change in my skin, unless it was for the worse. (This had been my whole experience up to that point.) But, the fact is that 4 or 5 months later I stumbled upon the particular combination of lifestyle changes that would trigger a completely unexpected and marvellous reversal of my de-pigmentation. And, by the time the following new year came around, I had regained roughly 70% of my lost colour and was confidently looking forward to recovering the rest.
I won’t bore you here with the story of how this came about because you may already know it (and, if not, you can read it here). But, what I particularly want to share with you in this post is two of the most precious lessons that life has so far taught me through my vitiligo – and for which I will always be immensely grateful: firstly, that we don’t always get to choose the hand that life deals us but that finding and appreciating the many good aspects of that life is something that enriches us and those around us; and secondly, it is always too soon to give up hope that a skin condition like vitiligo can be reversed.
I have noticed that nurturing a sense of gratitude brings with it a host of positive consequences beyond the obvious ones and renewed hope for the future is one of them. So, since it is early January now – and even if you are reading this at any other time of the year - what better time could there possibly be to start a gratitude journal? I promise you that, if you do, you won’t regret it.
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.
From the first moment a person notices a strange white patch appear somewhere on their skin, they start – whether they realise it or not – to develop coping strategies. There is no right or wrong way to #cope-with-vitiligo. After all, we are all different and different approaches work for different people. But it is worth being aware that some approaches are constructive whilst others may be self-destructive and counterproductive. Which of the following do you use?
1. Ignore it and hope it will go away
This is often our first reaction to seeing changes in our skin. We hope it is just one of those things – like a rash or a fungal infection and we imagine that it will clear up on its own. When we realise this is not going to happen we visit our doctor, full of confidence that a prescription for some cream or a course of tablets will sort us out. It is usually at this point that we receive a diagnosis of vitiligo, along with the customary uplifting talk (you know the one - “incurable… tough luck… just be glad it’s not cancer", etc.,etc.).
2. Cover it up and try not to think about it
This strategy differs slightly from the first one because it involves a conscious effort to hide the condition from others (and even from oneself too). If you can hide it well enough under clothing, makeup and camouflage no one will notice and you won't have to think about it either (just as long as you avoid mirrors every time you remove your disguise).
3. Keep clam and address the problem
Most non-life-threatening skin complaints are relatively simple to treat. So it is not unreasonable for our first reaction to be to visit our doctor, see a dermatologist, try our local pharmacist, health food shop, herbalist or alternative therapist or simply to reach for the medicine cabinet in our attempt to solve the problem. However, the absence of any significant help from these sources usually brings us to the realisation that, if we are going to find any real solutions, we are going to have to take charge of our vitiligo ourselves.
4. Give way to panic and despair
You know you are doing this when you find yourself checking the mirror every hour or so, looking for new lesions or wondering if the ones you spotted earlier were just a trick of the light. You alternate between crying, praying and bargaining with God: you promise never to complain about anything else ever again and to devote the rest of your life to doing good deeds if only you can wake up tomorrow morning to find your normal, even skin tone has been restored to you. You can think of little else other than your skin; you obsess over the size and number of lesions you find each day and you look at other people walking around with their perfect complexions and ask "why me?"
Our instinct for self-preservation is very strong, so it takes a lot to cause a person to want to harm themselves. But a condition like vitiligo, which can totally undermine our sense of security, confidence, even our sense of identity, is sometimes so overwhelming that it can lead to self-destructive behaviour like substance abuse or socially harmful behaviour like pushing away friends and family. This goes way beyond the occasional bout of self-pity and is something that may need professional help. There is no shame whatsoever in this and I would urge anyone who is feeling overwhelmed (like the lady who emailed me recently and admitted to suicidal feelings) to find a professional to talk to about it before things go any further.
6. Scour the internet for cures
By the time the internet had become the obvious go-to destination for the answers to all of life's questions, my vitiligo had all but gone. But I know that the first thing most people today do on receiving a diagnosis of vitiligo is go online. Spending hours on end, searching the internet for answers, trying out every remedy going and learning everything you can about the condition is, on the whole, a wonderful opportunity that was not available to previous generations of vitiligo sufferers and I am a big advocate. But, as with anything else, it is a two-edged sword that needs to be approached with common sense and moderation if you are to avoid becoming totally obsessed or, worse, falling prey to unscrupulous charlatans.
7. Embrace your vitiligo
This attitude has become much more prevalent since social media gave people around the world a way of sharing their experiences and photos and since awareness of vitiligo has increased (albeit from practically zero to just above barely visible). As coping strategies go, it is a very positive one. But, since it requires the individual to be completely open about their pigment loss and expose themselves to the scrutiny and curiosity of others, it is not for the faint-hearted. If this approach is not for you, you should not feel guilty about that. No one can tell you how you should deal with your vitiligo. Not everyone is able to embrace theirs. It only works for some but, when it does, it is certainly very inspiring to the rest of us and helps to raise awareness further.
8. Turn it into something creative
Some people are able to go one step further than simply embracing their vitiligo. They decide that, since life has handed them a lemon, they will make lemonade. #Winnie Harlow has built a highly successful modelling career around her vitiligo. #Kartiki Bhatnagar turned her vitiligo patches into beautiful art, #Keira Walcott created her own makeup range and broadcaster #Lee Thomas became a prominent vitiligo ambassador, author and motivational speaker. And these are just a few of the individuals who have turned their skin condition to inspirational advantage.
9. Draw strength from others
Drawing strength from others can be a powerful and mutually satisfying way of coping with any difficult situation. Whether our inspiration and support comes from celebrated individuals like those above, from "ordinary" vitiligo friends we encounter on forums or at meetings or from our network of family and friends, the love, acceptance, wisdom and humour of others is sometimes the best medicine we could ask for.
10. Give strength to others
This is often a natural consequence of the previous strategy and, in my experience, is even more powerful. When we look to others for help and support, we find ourselves sharing our own experiences, feelings and life lessons too and so the benefits flow both ways. Not only that, but I believe that the greatest hidden benefit of having to cope with a challenging condition is that it increases our appreciation, compassion and understanding of others. I used to think that people who claim it is better to give than to receive must be either hypocrites or saints. But now I think they just have a better understanding of how human beings work than I did.
It’s clear to see which of the above strategies are constructive and which are the opposite. And it is equally clear that adopting a constructive strategy (or maybe several) is the wise choice. But for many people living with vitiligo the psychological distress of seeing their skin colour disappearing before their eyes, and dealing with all of the consequences of this, is so severe that arriving at that choice does not come at all easily. For them, adopting a positive coping strategy is not a one-time decision: it is a journey that has its highs and lows and takes as long as it takes. It can feel like a solitary journey but I hope that everyone reading this now realises it does not have to be made alone.
Re-pigmentation and the meat-free myth
Before I get to the “meat” (sorry) of this article, I need to make a couple of things clear because the last thing I want to do is alienate anyone by my choice of title. Firstly, I am the biggest fan of vegetables you can possibly imagine and I believe that the healthiest diets consist predominantly of plants. Secondly, I am not trying to offend those readers who may eat vegetarian or vegan for religious, or other reasons of personal principle. It is just that I am frequently asked what I believe is the best diet for combatting vitiligo and one of the most frequently asked questions is whether or not you should eat meat. So, this blog is – from a purely nutritional point of view - about that very question. So now, having got the appetiser out of the way, let’s move on to the main course...
Everyone knows that veggies are good for you
Everyone on the planet must know by now that eating lots of veggies is good for you. That is not even up for discussion and, besides, I have blogged my socks off on that subject over the past few years so I won't repeat myself.
Not only does common sense tell us that this is true, but so do the health professionals, the scientific studies, the medical journals and even the history books, not to mention the billions of personal experiences shared, and blogs written, on the subject every day. Perhaps, most influential of all, is the testimony of our own bodies, which have a tendency to tell us loud and clear whether or not the food we are consuming day in and day out is giving us the right fuel to keep everything working as it should.
None of this will be news to your ears. Nutritional awareness has probably never been as widespread as it is now, thanks to the internet and our all-encompassing 24 hour global media. Yet nutrition is much like the legal system, only back to front. Just as ignorance of the law is no defence, knowledge of nutrition is no protection – unless, of course, you apply it. As the Chinese proverb says: “To know and not to do is not to know”.
For the average person in today’s well-informed society there is really no convincing excuse for not choosing a predominantly healthy diet over a predominantly unhealthy one. But things are a lot more confusing for those of us with #digestive-disorders or who suffer from chronic conditions like #vitiligo. The dietary guidelines that we need to follow in order to heal ourselves, and then maintain optimum health, may be very broadly the same as for everyone else but, it seems, there are some significant differences.
Why eating right is different for vitiligo
Too little scientific investigation has gone into the nutritional treatment and management of skin conditions – and vitiligo languishes, as ever, at the bottom of the research pile.
Of the conclusions reached, some are credible and backed by scientific knowledge, anecdotal experience or good old common sense. Others are debatable and some seem downright contradictory, as in the case of turmeric for example.
So, unless some solid, comprehensive research is conducted into diet and vitiligo, the sum of our knowledge on the subject will remain a small core of well-supported facts, surrounded by a thick (but useful, nevertheless) cocoon of anecdotal experience and educated guesswork, much of it conflicting and confusing.
In my opinion, the small core of factual knowledge we can rely on would include such indisputable advice as the importance of eating plenty of fresh vegetables, cutting out overly processed foods, reducing excess salts and sugars and drinking plenty of pure water instead of fizzy sodas and alcohol.
The thick cocoon would include, for example, advice on which types and quantities of fruits are good for someone with vitiligo. And it would definitely include the question of whether eating meat helps or hinders vitiligo recovery.
To meat or not to (m)eat?
Whilst there is plenty of evidence to suggest that the healthiest meats are unprocessed, organic, high quality and should make up no more than 20% of your food intake, I can find very little to suggest that a diet without meat is in any way nutritiously superior or even at all helpful to vitiligo sufferers. Quite the opposite, in fact.
Most healthy vegetarians remain healthy because they understand the need to consume vegetable sources of protein and supplement with vitamin B12, and its co-nutrients, to compensate for the absence of meat in their daily diet. But for those of us looking to improve a skin condition by changing our diet, it is not unusual for meat to be simply removed from the menu without such nutritional requirements being taken into account. This oversight is likely to be all the more damaging because the amino acids produced from eating protein are absolutely vital to skin health. And also because there is a well-established link between vitiligo and vitamin B12 deficiency. In addition to B12 deficiency, a lack of vitamin D is common to most vitiligo sufferers, so cutting out fish from the diet (as most vegetarians do) would carry an additional risk of making the condition worse.
Why do some people think avoiding meat helps?
If all the available facts suggest that cutting out meat is more likely to make vitiligo worse instead of better, how can it be that some people claim it helps them? I certainly don't doubt their experience. I am a great believer in the power of anecdotal evidence. My own story of recovery from vitiligo is a good example - it is based entirely on personal experience. If I had waited until scientists somewhere had conducted double blind placebo research into the effectiveness of each ingredient in the supplements I used to reverse my vitiligo before using them, I would still be waiting. And so would a lot of other people who have benefited from my anecdotal evidence. So I am a big fan of learning from the experience of others.
However, I wonder if the belief among some people in the benefits of a vegetarian diet for vitiligo have less to do with the relative nutritional values of a vegetarian versus a non-vegetarian diet and more to do with the fact that meat is harder to digest than fruit and vegetables and therefore aggravates the problems with nutritional absorption experienced by those of us with impaired digestive systems? This would explain why some individuals notice a slight improvement in their symptoms when they avoid hard-to-digest foods.
I would say that the link between poor digestive absorption and vitiligo straddles both of the categories I mentioned earlier (i.e. established fact and anecdotal experience / educated guesswork). I, for one, am utterly convinced it was at the heart of my own vitiligo and it is something that countless other vitiligo sufferers have shared with me over the past 7 years. And the relationship between digestive abnormalities, "leaky gut" and autoimmune conditions (including the serious vitamin B12 deficiency known as pernicious anaemia) is well known.
You might think that all of this is reason enough to stick to a vegetarian diet after all. But that might (if you are not careful about it) be a case of choosing good absorption of insufficient nutrients over poor absorption of sufficient ones: a classic case of Hobson's Choice. Neither option is likely to heal vitiligo. What we really need, of course, is to eat a diet that contains ALL the nutrients our body needs AND be able to digest and utilise them properly. This is why, I believe, a healthy diet plus a combination of appropriate nutritional supplementation and digestive support are so effective in treating vitiligo.
What worked for me... and what I recommend to others
The combination of nutritional supplementation and digestive support I used for my recovery consisted of two main supplements: Boost capsules (containing the nutrients most closely associatied with the tanning process) and Five a Day super-green foods (containing the broad nutritional support, plant protein and powerful antioxidant levels of concentrated vegetables). Because these supplements - combined with regular, moderate sun exposure, resulted in such dramatic re-pigmentation, this is what I recommend to others who want to treat their vitiligo naturally. And to those vitiligo sufferers who ask me about diet, my best advice, based on all of the above, is that a predominantly clean diet, consisting mainly of fresh vegetables, some fruit and (preferably) modest portions of quality meat and fish (or alternatively vegetarian or supplemental protein, vitamin D and B vitamins) is likely to be the best way of supporting a successful re-pigmentation protocol.
Creating Real Pigment without the Sun
Summer is now in full swing, a fact that may or may not be cause for celebration if you have #vitiligo. Whether this season fills you with joy or with frustration, I hope that you will feel encouraged by some news I shall be referring to later in this post on the subject of #tanning.
But first, is it me, or are the months going by faster and faster? (OK– I know it’s an age thing.) Another World Vitiligo Day has come and gone and here we are already a week into July. Our summer so far in the north of England has been a mixed bag of changeable weather, which has developed into a strange pattern over the past week or so. Each day starts out wet, windy and cold (and I mean winter-cold) and then, bizarrely, at around 3pm, it blossoms into a bright, sunny afternoon, becoming progressively hotter as the evening approaches. A classic case of all four seasons in one day! This calls for several different outfits to suit the evolving conditions. Swathed in layers of winter woollies until mid-afternoon, I gradually peel these off one at a time, eventually changing into shorts, a vest top and flip-flops.
At last I am loving summer
These changes in the weather are unusual and extreme for the time of year but they are not nearly as dramatic as the change in my attitude to them. Until a few years ago I would have welcomed cold summer weather because it allowed me to cover up my white patches and feel “normal”. It meant I didn’t have to be reminded constantly of my two-tone skin because I could hide it under layers of clothing and pretend it didn’t exist. It’s not that I didn’t love to see blue skies. I longed to be able to enjoy carefree, sunny summer days, like all my friends and family did, but my heart used to sink at the prospect of warm weather because I was deeply unhappy in my own skin. But now, having regained most of the pigment that I had lost over my 50 years of vitiligo, I am the first to moan about the unseasonably chilly rain and (who would have thought?) the first to stretch out on a lounger at the merest glimpse of the sun’s rays breaking through the clouds. At last, I am loving summer, beach holidays and being outdoors at every opportunity as much as when I was a little girl – more so, even, because now I profoundly appreciate those things I missed out on for so many years.
Vitiligo can cause you to feel all sorts of emotions but despair does not have to be one of them.
The reason I am sharing this shift in my perception of summer is in the hope of spreading a little sunshine of my own and dispelling some of the clouds of doom that may be hanging over you if your vitiligo is getting you down. I remember very well how frustrating and downright depressing this time of year can be if you are trying to cope with relentless pigment loss. It is a time that can evoke feelings of dread and even despair, feelings that are easier to bury during the winter, but that surface every time swimming and barbecue season comes round again.
The message I am keen to spread, through all my blog posts, is that although vitiligo is bound to cause you to feel all sorts of emotions, #despair does not have to be one of them. When doctors tell you there is nothing that can be done about vitiligo and when the years pass with no breakthrough in the search for a cure, it is natural to feel yourself losing hope. But I believe there is every reason for vitiligo sufferers to feel hopeful.
Years ago most patients had no choice but to take the doctor’s word as gospel and the most we could do to verify the information we were given was to ask for a second opinion. Today the internet gives us access to countless stories of people who have improved their vitiligo in a variety of ways and countless more scholarly articles and scientific papers that document the advances being made in medical research. This means that not only can everyone with vitiligo try known treatments until they find the one that works best for them, but we can also educate ourselves on the causes of the condition and progress towards a permanent cure – something that I now believe is a certainty.
What form such a cure will take is still up for debate. But, given the relatively small amount of funding that goes directly to vitiligo research, the breakthrough may well come as a spin-off from other medical advances, possibly in the field of cancer research and genetics. Last year’s strides forward with T-cell therapy are just one example of this.
SIK inhibitor could lead to a cure for vitiligo and other autoimmune conditions
Another milestone, reported in the media just last month, was brought to my attention by a vitiligo friend (thanks for flagging this story up, David :)). Scientists at Massachusetts General Hospital have come up with a novel approach to preventing sun-induced skin cancer by developing an experimental topical, small-molecule drug called a SIK inhibitor that produces a genuine “suntan” but without the need for UV exposure. If the drug is developed successfully and becomes commercially available, it could have exciting implications for vitiligo sufferers, as well as drastically reducing the number of skin cancer cases by providing effective sun protection to all skin types. Whilst the research paper makes no mention of vitiligo, it does indicate that the drug is even capable of developing a dark tan in skin types with red hair, despite the fact that redheads carry a genetic mutation that inhibits tanning. Extending this discovery to the treatment of vitiligo seems, at least to me, to be a logical spin-off. And this patent (bearing two of the names from the Massachusetts Hospital Team) on SIK inhibitors for use in treating inflammatory and/or immune disorders, including vitiligo, would suggest that moves are already being made in this direction.
It is too soon to say whether or not this particular approach will be the one that provides the long-awaited #cure-for-vitiligo. But early indications look hopeful and, if not this, then some other line of research will inevitably bear fruit. So, my recommendation in the meantime is to enjoy the sunshine the best way you are able, be optimistic about whatever vitiligo treatments or strategies you may be using and, above all, remind yourself that a vitiligo cure has never been as close as it is right now!
A more holistic approach to vitiligo
Doctors the world over are fond of telling us that #vitiligo-is-incurable. I get the impression that many of them have memorised their lines from a Common Book of Incurable Diseases and How to Deal With Them – or rather, not deal with them. The relevant chapter is probably called How to persuade vitiligo patients to shut up and suck it up and the subheadings include There is no cure, so don’t bother; Stop whining - it won’t kill you and Don’t talk to me about nutrition!
I know, I know. That’s a little harsh. But I feel strongly about this. I do realise that not all doctors quote from that particular book. But therein lies another problem for vitiligo patients. Medical opinion – and, more crucially, levels of medical training – on the subject of vitiligo are so unreliable and inconsistent that going to see your doctor is like a lottery. And the only thing you can be reasonably sure of is that your chances of winning a prize of any real value are slim.
I really think it is high time that the mainstream medical profession brought its general practitioners and specialists up to date on current best practice in addressing vitiligo and worked out a consistent protocol for helping patients who come to them with this neglected and underfunded condition. It is simply not good enough that people with a health issue that, for many, is frightening, depressing and psychologically devastating have to take pot luck on whether or not their family doctor or dermatologist will be well informed, or even remotely sympathetic, about it. It is not acceptable that so many people leave the doctor’s office confused and discouraged because of a lack of helpful information, a lack of support and an unwillingness on the part of the professional to even try to get to the bottom of their complaint. Many vitiligo patients are not even offered a referral to a dermatologist. And those who are often encounter similar indifference or negativity from that specialist too. (I know this is not universal but it is, I’m sad to say, all too common.) Other, more well known health conditions would not be met with such a dismissive response, so why should vitiligo be different?
I am not medically trained, so I accept that I am not remotely qualified to tell the medical profession how to do their job. But, like most people, I have been a patient on numerous occasions and I speak to a lot of others who have fallen foul of the way in which the system currently works (or doesn’t). In a way, you could say I owe my recovery to the ineptitude of the medical establishment. Their total lack of support led me eventually to experiment with nutritional treatment on my own and this is what almost completely restored my normal skin colour. But most people – reasonably enough – turn to their primary health provider when they first notice the symptoms of vitiligo. They deserve to have access to a doctor who is current, well informed and constructive. And they deserve to be told all of the available options and given the opportunity to see a specialist or ask for a second opinion.
But what kind of specialist does a vitiligo patient need?
A major reason why mainstream health care has never properly got to grips with addressing the needs of vitiligo patients is because it is a condition that defies being put into a neat and tidy category. Its root cause is still unclear but most evidence suggests it is multifactorial (involving many different factors – i.e. it's complicated!) For starters, there are several different forms of the condition (segmental, non-segmental and occupational / chemical). The majority of cases are thought to involve autoimmune disease, but not all of them do. No single treatment works for everyone. And the causes (plural?) appear to be a combination of genetic, digestive, environmental, hormonal, allergic, etc, etc, etc… In other words, it involves several of the body’s systems: just how many is still a matter of debate. In other words, if ever a condition required a holistic approach, it would be vitiligo. And that is just what our western health care systems are not geared up to provide.
If you are lucky, you can get a referral to a dermatologist. But how appropriate is that? You don’t have to read much of the available research into vitiligo to realise that the white patches are the last and only visible symptom of a disease process that starts inside the body and involves the digestive and endocrine systems at the very least – probably also the lymphatic and nervous systems too. So how many experts are there who are specialists in all of these disciplines? The only individual specialists who would stand a chance of taking a wider view of vitiligo are probably the researchers who, in most cases, do not routinely see patients at all. What the vitiligo patient really needs is a multi-disciplinary approach.
What can be done to improve things?
The current situation may sound hopeless. It is certainly challenging. But I do believe that an overhaul of the way in which vitiligo patients are handled is possible and would certainly be helpful. If new procedures were introduced that included routine testing for all the known factors in vitiligo and referrals made on the basis of the results, patients would be far more likely to get access to the most appropriate specialist expertise and therefore to the treatments that would most likely benefit them. Based on my own experience of vitiligo-recovery, I believe that the most effective treatments available so far all involve nutritional therapy. So, in an ideal world, all vitiligo patients who go to their primary care doctor would then be routed through the secondary care system, being referred from one relevant specialist to another, as appropriate, according to the results of their various tests. And one of these should, in my humble opinion, be a nutritional specialist who would then devise a programme for each patient that would address the particular type and source of their pigment loss.
Realistically, I do not expect we shall see anything like this being implemented by our mainstream health systems any time soon (and maybe never!). But any improvement to the existing quality of patient care would definitely help. The need for a multi-disciplinary approach to vitiligo research has already been documented, as this article shows: Valle, Y., Lotti, T. M., Hercogova, J., Schwartz, R. A. and Korobko, I. V. (2012), Multidisciplinary approach to R&D in vitiligo, a neglected skin disease. Dermatologic Therapy, 25: S1–S9. doi: 10.1111/dth.12009 but it seems to me that the need for an equivalent rationale to clinical practice has simply not been recognised. Until it is, most vitiligo sufferers will continue to receive inconsistent and unreliable support from their doctors and face the choice of either putting up with the condition or, like me, finding their own solutions and treating themselves.
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.