Will vitiligo cure be a magic bullet?
Last month I wrote about the exciting progress being made towards an eventual cure for vitiligo by Dr John Harris and his team at the Vitiligo Clinic and Research Center at the University of Massachusetts Medical School. In particular, I celebrated Dr Harris’ unequivocal assertion that the damage caused to pigment cells in vitiligo is fully reversible. To me, confirmation of this fact from such an eminent expert was more thrilling than any of the detail about experimental drugs currently being trialled. I found it thrilling because it not only reinforced my own experience of vitiligo reversal but it was a clear indication that it is no longer a question of whether a vitiligo cure will be developed, but rather when.
The fact that clinical trials are actually going on now and that the first generation of drugs is likely to emerge within the next couple of years is obviously good news. These medications promise to be a godsend to the millions of people around the world for whom pigment loss can be psychologically devastating and socially disabling. Getting rid of the white patches that are the only obvious sign of illness in vitiligo has been a shared dream for countless sufferers, therapists and researchers alike. And it now seems highly likely this dream will be realised within the next few years.
I, for one, am delighted at this prospect. It has the potential to change the lives of an estimated 1- 2% of the world’s population for the better. And, whilst my own vitiligo has virtually disappeared, I am always aware that the condition could return if I were to stop the nutritional therapy that has reversed it or else expose myself to certain triggers.
The research so far has identified what appears to be the core pathway for the development of vitiligo, which involves destructive autoimmune activity and an abnormality of the melanocytes (pigment cells). The aim is to pinpoint (or at least narrow down considerably) the process by which the immune system attacks melanocytes, as opposed to other parts of the body, and turn that particular “switch” off without deactivating the whole immune system. But Dr Harris makes no secret of the fact that these initial medications will not offer a perfect cure.
If I understand what I have read on this subject correctly, it is not yet possible to produce a drug that targets the autoimmune threat to pigment cells with pinpoint precision. So the best that can be expected of the first wave of medications is that they will halt and reverse vitiligo but may also increase susceptibility to certain other conditions such as shingles.
What do we mean by "a real cure"?
This begs the question: what do we really mean when we talk about a vitiligo cure? So-called magic bullets rarely, if ever, perform perfect medical miracles. Drugs usually come with various limitations, side effects or other unintended drawbacks, which may or may not later be minimised through continued research and development. And, of course, they always come at a price because medical research is an expensive business and pharmaceutical companies are not generally known for their charitable work. So, optimistic though I am, I am also aware that the first new treatments your doctor is likely to prescribe for your vitiligo will not be perfect and they will not be cheap.
In a sense, you could say that this is no different from the current state of affairs. We already have access to numerous imperfect vitiligo treatments and none of them (except for sun exposure) is free. So, as long as the new drugs prove to be better at re-pigmenting vitiligo lesions than current options, then at least modern medicine will have succeeded in alleviating a lot of psychological suffering by providing a cosmetic solution to the problem. And that is good. But I very much hope that vitiligo research will not stop there. Because I do not believe that eradicating skin de-pigmentation is necessarily the same thing as curing a patient. And, as patients, I think we need to be aware of that concept so that we don’t find ourselves relinquishing all responsibility for our wider health just because our skin reverts to its normal colour. I believe we will still need to ask two important questions: what caused the pigment loss in the first place; and has the drug fixed that?
Curing white patches or curing people?
Five years ago in this blog, I posed the question: is vitiligo a disease or a symptom? If it is a disease, then any treatment that succeeds in permanently eradicating de-pigmentation will, deservedly, be hailed as a cure. But if it is (as I believe) a symptom, then it will only have succeeded in providing a cosmetic solution. It will not have addressed the reason for the symptom. And, whilst that would still be a life-changing achievement for millions, it is worth being aware that this could present additional risks, aside from the kinds of side-effects that might be considered acceptable (like the odd case of shingles).
Not being a scientist myself, I can only use my common sense and limited knowledge to speculate as to what these risks might be but an increased susceptibility to various pathogens (and maybe not just minor ones) is evidently one. For another, I imagine that blocking autoimmune attacks against melanocytes is not the same thing as curing autoimmune disease so it might cause the immune system to redirect its attacks to other healthy cells instead. And, as I indicated earlier, eradicating a symptom like pigment loss may be a bit like removing the safety warning signs from a faulty piece of equipment. It may give us a false sense of security about the state of our health.
Am I pouring cold water on the prospect of a "vitiligo cure"? No -absolutely not. It is what I have spent the major portion of my life hoping and praying for. And I am still eagerly looking forward to the day when doctors will be able to offer vitiligo patients a reliable way of reversing their pigment loss. But I am just sounding a warning note that using drugs designed purely to return the skin to its normal colour will not necessarily be the same thing as restoring the individual to health.
Experts agree that vitiligo is a multifactorial condition. In other words, a complex combination of factors are involved in its development and these are not even necessarily the same in every case. For myself, and many others I have come into contact with over the past 8 years, an underlying cause of our vitiligo is evidently poor nutritional absorption, due to digestive abnormalities. And these will still need to be addressed if we want to be free of all autoimmune diseases and enjoy full health.
So, whilst I am very excited to think that we are about to enter a pioneering stage in medical vitiligo treatment, one that promises to provide the best cosmetic solution to date, I anticipate that the underlying health problems that cause de-pigmentation in the first place will still need to be addressed before these medications can truly be called a perfect cure.
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!
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.
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!
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.
as effective therapy for vitiligo
There was a time when any #vitiligo patient who dared mention the word “vitamin” in the presence of their doctor would have earned themselves a patronising smirk and a dismissive assertion that “no evidence exists to show #nutritional-supplementation has any effect on the condition whatsoever”. Sadly, that time is not yet firmly in the past. But I fervently hope, and believe, that an excellent new publication called “The Use of Vitamin Therapy for the Treatment of Vitiligo” will help to consign this kind of reaction to history.
The woeful ignorance of most mainstream doctors on the subject of nutritional therapy for vitiligo was clearly a key motivation for the book's author, Audrey VanStockum @Recouleur. As she explains in her preface, she suffered with vitiligo and psoriasis for years, was misdiagnosed for both conditions and visited a total of 23 clinicians over a 14 year period in her search for answers to her skin problems. She realised that her negative experience highlighted “a paucity of information and specialized training” and it puzzled her that so few healthcare providers seemed to have any knowledge of effective vitiligo treatments, even though published research on the subject - dating as far back as 1945 - was openly available. Her frustration at this state of affairs led her to start doing her own research into the subject of nutritional therapy, trying various vitamin and mineral supplements herself and observing her responses. Her wide reading on the subject and experiments in self-treatment resulted in some re-pigmentation and, ultimately to the creation of her own dietary supplement called Recouleur.
Audrey's expertise in the area of nutritional therapy is a wonderful example of how frustration can sometimes be the mother of invention. The idea that we need to take responsibility for our own vitiligo treatment is a familiar one for many of us because we too have repeatedly met the same brick walls when trying to find constructive help from the medical community. Like Audrey, some of us will have wondered why our doctors have apparently never come across any of the research that we ourselves may have seen whilst trawling the internet for solutions and why it is that they are so resistant to the suggestion that nutritional therapy should be prescribed for vitiligo. In fact, I have sometimes advised vitiligo friends to avoid the subject of food and supplementation completely when visiting their doctor because I could predict the likely reaction and did not want anyone to rain on their parade. My view was that the proof of the pudding was in the re-pigmentation that people were achieving through supplementation and that trying to persuade the medical profession to recognise these successes was futile. But that was because it was not a straightforward matter to have the relevant research at one's fingertips during the typical doctor-patient consultation. Well, that was before Audrey's new publication, which – in addition to its main aim of informing vitiligo sufferers themselves - could also easily be used as a way of presenting their doctors with the nutritional facts, all in one well researched and clearly written 40-page booklet.
One of the strengths of “The Use of Vitamin Therapy for the treatment of Vitiligo” is, in my opinion, the fact that it strikes the perfect balance between scientific detail and simple explanation so that it makes suitable reading for anyone, regardless of whether they have a scientific background or not – and regardless of their prior understanding of vitiligo. The author assumes nil knowledge of the subject, explaining what vitiligo is and the processes thought to be involved in its development. She then reviews key vitamins and minerals used by the body to produce skin pigment and describes the role played by each one, as well as the adverse effects of deficiencies. And, crucially, she backs up all of the information with relevant research studies. As I read through the book, I found references that I had not come across before, as well as some that I had seen but had since lost sight of in the vastness of the internet. So, it was extremely useful to have such a comprehensive overview of the subject and its associated literature all in one place and set out in such a clear and concise way.
I also found myself saying (aloud) “YES!!!” when I read the chapter on what Audrey has termed “The Three-Prong Approach” to vitiligo treatment because her view on this makes total sense and resonates with my own thoughts exactly. This approach states that that the most effective vitiligo therapies involve one component from each of the following categories:
In this way, the condition is being addressed from the inside out as well as the outside in and is benefiting from UV exposure (nature's way of stimulating pigment) as well as active, therapeutic ingredients (to treat the condition).
In my experience, most doctors only ever try to treat vitiligo “from the outside in” (i.e. they might use one, or both, of categories 2 and 3). Many do not even advocate any treatment at all because they claim that improvements are minimal and, at best, temporary. However, I am convinced that this is because they omit category number 1. They neglect to include nutritional therapy in their treatments. It stands to reason that external therapies may help treat skin symptoms but only internal ones can hope to address the root cause and prevent symptoms from recurring over the longer term.
The medical profession has been slow to pick up on the findings of research done as long ago as the 1930s and 1940s that clearly pointed to digestive deficiencies as being at the root of vitiligo. Audrey VanStockum draws on the findings of this research, further supported by anecdotal evidence of vitiligo sufferers whose pigmentation improved with improvements to their diet.
There is no question in my mind that correct nutritional #therapy can reverse vitiligo. Audrey and countless others (including myself) are living proof of the fact. But our modern health systems are heavily biased toward pharmaceutical and surgical solutions, no doubt because these are the areas of research that tend to receive the most funding. Concepts of healthy eating and nutritional supplementation as a means of restoring health receive very little serious attention and therefore do not produce the amounts of clinical research data demanded nowadays by the medical establishment. This is frustrating but perhaps it is understandable. Sophisticated drugs, stem-cell therapies and ground-breaking surgical procedures are needed for all kinds of life-threatening conditions that afflict the human race and they are super-expensive to develop. So this is where the funding tends to go. (And, if we want to be cynical about it, these are the treatments that can be patented and become lucrative for thedrug companies and professionals who administer them. Whereas foods and nutritional supplements already exist and are widely available.) What is lacking is not simply new clinical data to support nutritional therapies but an awareness and acknowledgement on the part of doctors that this approach is sometimes the most effective way of treating certain conditions, and that one of those conditions is vitiligo. And, to be fair, there is another requirement, if things are going to change: and that is individual patient responsibility not to be over-reliant for their own state of health on the men and women in white coats. We need to take charge of our own recovery.
In the final paragraphs of the book, Audrey puts all of this in a nutshell: she says, “First, patients need to be their own health advocates and seek solutions for treatable conditions instead of accepting any answers physicians provide, such as “Nothing can be done,” which is said all too frequently to vitiligo patients. Second, physicians need to be open to complementary therapies for treating highly challenging diseases that do not always respond to conventional treatments. Third, more robust studies are needed to analyze the role of vitamins in treating vitiligo; and fourth, dermatological residencies should include a tract on the role of nutrition.”
Obviously, there is far too much detailed information in this excellent publication for me to do more than scrape the surface in this blog. So, I would recommend it as essential reading for anyone, from any background (scientific or not) who wants to understand the relationship between nutrition and vitiligo and how nutritional therapy can help to treat this complex and frustrating condition.
Congratulations, Audrey - and thank you for sharing your knowledge!
for vitiligo and for general health
Having lived with widespread #vitiligo for almost 50 years, I am eternally grateful for my re-pigmentation and will never take my recovery for granted. Since this life-changing event came about as a result of taking nutritional supplements, I have to suppress a snort of derision every time I hear a doctor or a newscaster announce the latest opinion from the medical community, claiming that supplements are not necessary as long as you eat a “well-balanced diet”.
For a start, no one nowadays eats a well-balanced diet, unless they live in a remote area of the world with exceptionally good soil and unpolluted waters and produce their own organic vegetables, fish and meat. And, more to the point, not everyone enjoys that mythical state of “normal health” to which such a well-balanced diet would be sufficient. Some of us have chronic conditions which involve serious nutritional imbalances that have developed over many years. And it takes more than a plate containing a portion of each food group every day – important though that is – to rectify these imbalances.
It's official: supplementation is recommended
So, this week's research findings, confirming further benefits of vitamin D supplementation, should have come as no surprise. But surprised I was, so jaded am I by the constant refusal of most western health systems to acknowledge the importance of nutritional supplementation as a serious alternative to drugs. It is well-known that #vitamin-D deficiency can lead to bone diseases like rickets and osteoporosis but the new research, conducted at Queen Mary University of London and published this week in the British Medical Journal, confirms that vitamin D supplementation is not only helpful for bone health – as we all knew - but is also a safe and effective way to boost the immune system, helping to prevent upper respiratory infections like colds flu and even pneumonia. Since very little vitamin D is naturally available in our food (relatively small amounts can be found in oily fish, egg yolks, cheese and some types of mushrooms), the researchers conclude that supplementation is advisable and that the benefits of this are even on a par with the flu vaccination.
This information is likely to be of obvious interest to everyone, but since vitamin D plays a role in the process of skin pigmentation and most vitiligo sufferers have subnormal levels of it, it is yet another reason why those of us with a history of vitiligo should ensure we have sufficient intake of this nutrient. Moreover, the suitability of vitamin D supplementation as a real alternative to the flu jab is of additional relevance, since experts tell us that vaccines can actually be counterproductive for people with autoimmune conditions.
It is not known whether vitamin D deficiency is a cause of vitiligo or whether it is a consequence, especially in light of the fact that vitiligo sufferers are typically less likely to boost their levels naturally through the normal channels of sun exposure (since most avoid the sun) and may not absorb much, if any, through their diet (since many have poor digestive absorption). Either way, supplementation seems to be the only way of ensuring an adequate uptake.
So, whilst I am now free to enjoy healthy doses of sun-bathing whenever I go on holiday (or when the weather gods look kindly on us here in the UK), I still take additional vitamin D, in the form of a spray which is easily absorbed into the blood stream and I also get some with my regular top-up courses of Boost, the key supplement I used to re-pigment.
It's what vitiligo is all about
It's a fair bet that most people would automatically associate the word “inflammation” with swollen joints, insect bites or infected wounds. But #inflammation can be completely invisible to the naked eye and it may or may not be accompanied by pain. It can occur in any organ and any cell in the body and it is involved in every type of illness and injury. In fact, you could say that inflammation = disease (in the real sense of the word, i.e. dis-ease) and an absence of inflammation = health.
As a non-scientist, I tend to think in descriptive terms about such things. A medical professional would be able to explain the inflammation process in a great deal of scientific detail, whereas I simply visualise it as an interruption or breakdown in an organism's natural balance. I'd be the first to confess that my description is vague and unscientific compared to a technically accurate one but it describes exactly the same reality and hopefully conveys it in a way that is easier for most of us to process.
There are many types of inflammation and they are not all necessarily cause for concern. For example, a sprained ankle, a flea bite or a bruise would all involve temporary, localised inflammation. A bad hangover or a bout of food poisoning would affect the whole person and, hopefully, not occur too often or last for very long. A case of flu can cause severe inflammation throughout the body that might last for several weeks. In all these instances, though, the inflammation is relatively short-lived because most people's internal systems (immune, digestive, circulatory, lymphatic etc.) are robust enough to do their job of righting the good ship “Healthy Human” whenever she hits stormy weather.
But a recurrent headache, ongoing joint pain, persistent indigestion, repeated allergy flare-ups or skin disorders are all examples of chronic inflammation that are highly unlikely to do anything other than continue to get worse unless action is taken to break what has become a vicious cycle of tissue damage. Left unchecked, such chronic inflammation typically leads to ever worsening general health as the constant degradation of the body's normal balance perpetuates a destructive chain reaction that produces more and more diverse symptoms, usually culminating in life-threatening illness. To make matters worse, the medication that is prescribed by most well-meaning but mystified doctors along the way, in their attempt to treat each new symptom as it arises, produces side-effects (as drugs invariably do). These side effects add to the burden of inflammation in the body so that, by the time the individual has descended into multiple mystery syndromes, full-blown autoimmune disease or any number of inter-related life-threatening conditions, finding and correcting whatever initially interrupted the balance of their good health would be like trying to find a hypodermic needle in a haystack full of other hypodermic needles under a pile of pills inside a locked barn in the middle of nowhere… without a map!
Modifying the immune response
It is well established that an inflammatory response is at the very heart of the development of #vitiligo and so some existing treatments, as well as current research into new treatments, focus on this aspect of the condition. They attempt either to neutralise the trigger for the inflammatory response - or else to interrupt, or prevent, the response in some other way – in the hope of stopping the de-pigmentation process in its tracks. For example, immune-suppressive and immunomodulator agents have been used (with varying results) to lessen the immune response to triggers but most of these have so far produced limited success with vitiligo and many unwanted side effects.
Tacrolimus (Protopic Ointment) and Pimecrolimus (Elidel Cream) are probably the best known, most effective and safest examples of this kind of treatment. They are proven to reduce inflammation but the side effects cited for both Protopic and Elidel are enough to make anyone think twice about using them. And the same can be said of corticosteroids like Triamcinolone, Hydrocortisone topical and Clobetasol Propionate.
Recent findings suggest that anti-inflammatory drugs developed for the treatment of rheumatoid arthrtis, like Tofacitinib (Xeljanz ) and Apremilast (Otezla) could potentially be of therapeutic benefit to vitiligo patients but the evidence so far is sparce and so much more research would be needed before coming to a definite conclusion on this.
Targeting free radical activity
Other treatments focus on the oxidative stress that is a feature of inflammation in vitiligo. These include pseudocatalase, which has been used in combination with Dead Sea climatotherapy or UVB exposure for the treatment of vitiligo. This treatment has enjoyed mainly positive reviews, a good safety record and very encouraging results but it is not without its detractors, with the authors of this paper even claiming it to be totally ineffective.
Another treatment I was alerted to recently involves the topical application Prostaglandin E2 (PGE2) as a treatment for vitiligo because of its stimulant and immunomodulatory effects on melanocytes but, whilst results were encouraging, it is still considered to be at the experimental stage. And yet another experimental treatment is Afamelanotide (Scenesse) which seeks to re-pigment vitiligo by preventing the inflammatory response to UV light.
Whilst the potential of these therapies for the future treatment of vitiligo is encouraging, their efficacy and safety have not yet been clearly established and, since we are talking in most cases about drugs with known side-effects (= more inflammation) and inconclusive results, my choice is still to reach for the contents of nature's own medicine chest when it comes to combating the inflammatory response involved in the de-pigmentation process.
Topical, dietary and supplemental antioxidants are known to reduce inflammation and restore acceptable levels of free radical activity in the body and they do this without fear of side effects. Applying naturally anti-inflammatory substances to the skin, like coconut oil or aloe vera is safe and can be effective as part of a wider nutritional and lifestyle protocol in treating vitiligo. Similarly, the use of custom-made vitiligo treatments like Vitix Gel and Vitix tablets, both containing natural antioxidant extracts that are proven to combat free radical damage without any known risk of adverse reactions seems to me to be a safer and more effective way of treating vitiligo, or indeed most chronic, inflammatory disease than taking unproven, experimental and potentially dangerous drugs and ending up buried in that drug-infested haystack inside a locked barn in the middle of nowhere… with no map.
Certainly, using nutrition as medicine to heal inflammation by restoring balance to my whole system, rather than working my way through the doctor's prescription pad with each symptom I developed, worked really well for me - virtually ridding me of all my white patches over a period of about 18 months. Not only was this result more dramatic than any I have found in any of the literature on pharmaceutical research to date but it was achieved without any adverse effects and, in fact, came with the added benefit of better general health too. No doubt this all-round improvement illustrates the point that, just as chronic inflammation can be a downward spiral, reducing inflammation by restoring balance throughout the body is an upward one.
“Season of mists and mellow flu-fulness ...”
It's that time of year again. The days are getting shorter, the air has a chill to it that holds the promise of frosty days and bitter nights to come and the trees are shedding their golden glory, forming satisfyingly crunchy carpets underfoot. Well, so much for the poetic beauty of autumn. But a more prosaic reminder that we have reached this point in the calendar is the abundance of public service posters and announcements encouraging everyone at particular risk of health complications to book their annual #flu-jab.
To jab or not to jab: that is the question
This poses, in fact, not just one, but two tricky questions for those of us who have #vitiligo (or any other autoimmune disease). 1) Does vitiligo count as one of those health conditions that carry a greater risk of flu-related complications? And 2) do any such risks outweigh those that might be associated with the flu vaccination itself? These are questions I ponder at this time every year because, even though my vitiligo is almost completely re-pigmented now (after spreading steadily for 5 decades) I know that I am still prone to certain de-pigmentation triggers and therefore cannot afford to be complacent.
So far, I have always chosen to run the risk of possibly catching flu over the potential risks of being vaccinated. I have never been quite sure whether this is the right decision – especially as I do usually go down with the flu once each winter. Nevertheless, I have continued to make that same choice, mainly because I have never noticed any adverse effect on my vitiligo as a result of getting the influenza virus, whereas most other #vaccinations and inoculations I have ever had in the past have left me feeling unwell. I am aware that this could be either coincidence or even imagination on my part and you could, quite reasonably, argue that catching the flu is likely to make me feel much more unwell. But my reluctance to have the jab is based on more than just a vague perception. I base it on a simple exercise of weighing up the potential pros and cons and realising that I am the only person who can make the decision because the doctors simply don't know whether it is wise for someone with vitiligo to have the flu jab or not.
Of course, the advice routinely handed out to anyone asking this sort of question is “ask your doctor”. But, since – in my experience - most doctors in general practice know less about vitiligo than the patients who have it, all you would get would be a well-intentioned opinion, based on limited knowledge. And, judging by everything I can find on the subject, asking a dermatologist would probably not be very much more helpful either. The fact is that the jury is still out on the subject of whether patients with autoimmune diseases should receive vaccinations and, to some extent, the jury is still out on the subject of whether vitiligo is a classic autoimmune disease in any case. So, where does that leave you and me? I think it leaves us to look at whatever evidence we can find and make up our own minds.
The battle ground
When it comes to vaccinations (not just the flu jab, but all vaccinations) feelings run high and opinions differ widely, both within the mainstream medical profession and the wider health system, as well as among the general public. No doubt some opinions are based on emotion and instinct, some on vested interests and some on a lack of accurate information. So this can make it difficult to get to the real facts – at least, the known facts, since the field of #immunology is still being explored and research still has a way to go before all of the questions we have about the immune system are answered.
Much of the controversy around the safety of vaccinations revolves around the question of infant inoculations. One camp says, quite rightly, that infant vaccination has saved millions of lives since it was introduced and has helped to eradicate a number of destructive and deadly diseases from the planet. When you look at the statistics, this is undeniable. Equally undeniable, though, is the fact that definite cause and effect has been established over the past few decades between significant numbers of individual cases of illness, and even fatalities, following vaccination. This is why the anti-vaccination camp argue that the body's own immune system should be left alone to do its job of protecting against infection and not be tampered with. From what I have read about infant vaccination, this view makes a lot of sense because to interfere with an infant's immune system while it is still in the process of developing does seem counter-intuitive and there appears to be quite a bit of credible scientific evidence to support this view. However, the question of infant vaccination is so complex and emotive that I want to confine this blog mainly to adult vaccination, since I am looking at this subject in the context of vitiligo, a condition that is usually not apparent until a person has past the infant stage. (But, I will refer briefly to the implications of infant vaccination later.)
10 known facts
I have read a lot about this subject while preparing this blog and realised what a minefield it is. So, rather than try to present all the research and the various conclusions and their implications in detail (which would require a skill set I don't have and would fill a very fat book into the bargain) I have decided to distill the known facts that I have been able to find into a very simple 10 point overview and draw some conclusions in relation to the question of vaccination for people with autoimmune disease in general and vitiligo in particular. I have then listed a number of references at the end to enable you to see how I came to my conclusions.
In coming to my own conclusions, I needed to filter out some of the misleading and biased information to be found on the topic of vaccinations online. I recognise that some doctors and researchers may be swayed by vested interests and personal reputation. And, as regards the views of non-scientists, there is a lot of well-intentioned but often ill-informed popularist hype on the subject.
It was hard for me not to get swept along by some of the views of the anti-vaccine lobby because I am a great believer in the power of nature to promote good health, so I instinctively feel that the immune system should be left to do its thing so that immunity to infection can be developed naturally over the course of a lifetime. My own, perhaps simplistic, view is that vaccinations would probably not be necessary if people all ate correctly from infancy to old age and lived in healthy environments, drank pure water and avoided environmental toxins. (But, of course, this is not the case.) And, for those of us who are prone to autoimmune disease, I believe that the answer should not be to boost or suppress the immune system artificially, but rather to balance it naturally.
However, putting my instincts on hold temporarily, I wanted to get to the bottom of the science behind the whole question and the best expert resource I found whilst I was reading up on this subject was Professor Yehuda Shoenfeld, founder and head of the Zabludowicz Center for Autoimmune Diseases attached to Tel-Aviv University, Israel. Based on his findings, as well as on everything else I have read so far, my own conclusion is that I shall be sticking to my policy of avoiding vaccinations wherever possible because the likelihood is that for someone with my genetic and medical history (a vitiligo sufferer who is also prone to allergies) vaccinations are likely to cause more problems than they cure.
Suggested reading & links
My name is Caroline.