Free streaming broadcast: Sat June 23rd & Sun June24th
Great news for all of us in the vitiligo community around the world: by the time next Monday (25th June – #World-Vitiligo-Day 2018) arrives, we could find ourselves a lot better informed about current and future developments in #vitiligo-research and clinical care. I say this because we all have the opportunity to stream this year’s WVD conference by visiting this page on the University of Massachusetts Vitiligo Clinic and Research Center’s website.
Entitled Children, Research, and Hope for the Future, the conference will be hosted by the Director of the Centre Dr John Harris (you may have seen my previous blog post about Dr Harris) and Valarie Molyneaux the Founder and Chief Executive Officer of VITFriends and the programme will include presentations from a diverse and impressive list of guest speakers, drawn from the worlds of dermatology, pigmentation research, psychology, modelling, broadcasting, celebrity, business and even photography.
The live stream for the conference will be available at the following times (time zone: EasternDaylight Time / UTC/GMT-4)
If you do listen in, I feel certain that World Vitiligo Day 2018 will not only find you better informed, but uplifted and encouraged too. Although we may not always be aware of the fact, there is so much to celebrate and anticipate in the areas of vitiligo research, awareness and support. And this weekend is probably the best chance to date for us to feel part of this exciting progress.
2 conclusions and 4 tips for UV exposure
Many of us are finally emerging from what has seemed like endless chilly winter months and are looking forward to the light and warmth of summer. As the years since my re-pigmentation pass (and, it has to be said, as I get older) I find I crave sunlight more and more. So springtime finds me in a state of eager anticipation, keen to dust off our cobwebby sun loungers and get out into those healing rays after such a long time swaddled in woollies and fleeces.
The years I used to spend dreading hot and sunny weather seem to belong to another life now, although the memory of those feelings is still very clear in my mind. The prospect of having to cover up my vitiligo patches with clothing or cosmetics to avoid social embarrassment, when everyone around me was baring their flesh with carefree abandon, used to plunge me into a state of gloom, bordering on bitterness and self-pity, unattractive emotions that I used to mask just as carefully as I camouflaged my white patches. The whole rigmarole of hiding my vitiligo during the summer, and hiding my feelings about it, was troublesome and sometimes quite exhausting. I simply never came to terms with the condition sufficiently to go anywhere without my make-up or sunless tan on or my flesh expertly covered in well-chosen clothing. This often left me feeling tense and on edge throughout the very season when I should have been relaxing and enjoying outdoor fun with family and friends.
Nowadays, the only time I revisit those emotions is when I hear from others who are going through the same situation as I did back then. One of the most frequently asked questions I receive each spring and summer relates to the pros and cons of sun exposure: whether or not it should be avoided, whether sun protection should be used and, if so, what kind, etc.
So, in this blog, I would like to pass on some of my own experiences and impressions around this issue, in case you are wrestling with it yourself at the moment. The following comments are based on my own observations, as opposed to any formal, scientific evidence. But I hope you find them useful anyway.
Despite my first small patches of vitiligo developing when I was just a toddler, family photos show that I did otherwise develop a light, even tan whenever I spent time outdoors. By the time I reached my teens I had come to realise that what had become, by then, my annual sunbathing ritual in pursuit of a fashionable tan was leaving me with several new vitiligo lesions each summer. My perception of this (and I still believe this to be true) was that my sunbathing was not the cause of my pigment loss but that it simply revealed a process that had been occurring throughout the rest of the year.
I could see that the condition was spreading and it began to feel like a race against the inevitable to see how many more years I could enjoy developing a natural tan (with the aid, by then, of some camouflage here and there). I sensed that, sooner or later, I would have to start avoiding the sun altogether so as to make the contrast between my vitiligo and my normal skin less obvious. Eventually, the effort involved in trying to tan at the same time as hiding my white splotches became too much, added to which the de-pigmented skin was very prone to sunburn. I used to find I could only stay out in strong sunshine for about a minute before it started to burn. I used to feel myself frazzling, almost as if my skin was in contact with a red-hot poker. So I started to avoid sun exposure as much as possible, which I found quite depressing.
I now know that avoiding the sun is not only bad for morale but it further lowers vitamin D levels, which are typically lower than normal in vitiligo sufferers to start with. And even if you use sun protection creams you increase the risk of chemically aggravating your vitiligo. So, if sunbathing makes vitiligo patches burn and increases the contrast between them and the surrounding skin and SPFs are best avoided, what is a person supposed to do?
2 conclusions about sunshine and vitiligo
Well, my own experiences over the last 8 years and all of the information that I have absorbed on the subject have led me to the following conclusion: that UV light (whether sunlight or artificial UV) helps to reverse vitiligo but generally only in the following circumstances …
I was one of those cases for whom phototherapy alone was completely unsuccessful. I had tried PUVA as a young woman but it had no effect whatsoever on my vitiligo, except to make it sore. It turned pink, then pure white again.
I have come to believe that this is what happens when you try to “force“ the tanning process to occur (in this case by simply using a photosensitising agent plus UV light) without giving the body sufficient nutrients for the pigmentation to take place.
It was not until I had started to provide my body with supplemental tanning-related nutrients (in the form of Boost) and strong antioxidant protection (plus a variety of additional nutritional support in the form of Five a Day green formula) that UV exposure began to re-pigment my vitiligo patches instead of burning them. This experience confirmed my suspicions that the digestive problems I had always had since early childhood, must have left me depleted in these nutrients and that this was the reason for my vitiligo (as well as for the Chronic Fatigue that had plagued me since early adulthood).
Once I had been taking supplements for a week or so I noticed I was able to stay outside for significantly longer without burning. As a result of doing this on a regular basis for several weeks, my pigment started to return and this process continued until virtually all of my natural colour had returned. When I then switched to narrowband UVB therapy through the winter months I found this protocol a dramatically different experience from my previous ill-fated experiment with PUVA. The UVB perpetuated the rapid re-pigmentation that had started during the summer and actually seemed to accelerate it.
My feeling is that, as long as you are providing correct nutritional support to your body, it does not make a huge difference whether you use natural sunshine or whether you opt for phototherapy instead. Phototherapy has the advantage of being available year round and of being easier to administer with scientific precision. But sunshine is free of charge and a much more pleasant relaxing experience :)
My top 4 tips on UV exposure
Since people often contact me and ask for my views on the use of sun protection products, here four of my top tips:
I hope my observations on this topic have been helpful in some way. It’s fair to say that my relationship with sunshine has changed dramatically over the years. As a child I loved it. As a teenager I struggled to hang on to that love. For much of my adult life I feared and avoided it. Now I see it as a source of warmth, relaxation, enjoyment and – above all – healing. I really hope that if there is anyone reading this and finding themselves in a dark place this summer (either literally or emotionally) you might start to view sunny weather positively once more. Instead of dreading it, maybe you will decide to welcome it and use it as a vital part of your journey back to health. I do hope so.
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!
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 ;)
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.
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.
Investigating the mystery of vitiligo
I don’t remember exactly when my addiction to detective stories began. It might have been back in the 1970s, when I first started watching the disarming and dishevelled homicide detective Lt. Columbo relentlessly hunting down his prime suspects with “just one more question” until they were finally forced into revealing themselves as the killer. Or it might date all the way back to endless childhood hours engrossed in the latest thrilling adventures of Enid Blyton’s Famous Five or Secret Seven. Nowadays I am a sucker for a good episode of Miss Marple, Poirot or, my guiltiest pleasure of all, Midsomer Murders. And I always have a ready supply of whodunnits on my Kindle as well as on my book shelf.
My preoccupation with murder mysteries may sound a little morbid but, in my defence, it is not the blood and guts that draw me to the genre. It is the intriguing plots and the challenge of piecing together a seemingly impenetrable puzzle. Of course, the pleasure in most crime dramas comes from looking for clues and motives, spotting red herrings and attempting to solve the mystery ourselves. The enjoyment in an episode of Columbo, on the other hand, comes from watching someone else put the pieces together, whilst we – the audience – already know who the killer was and how they did it.
The puzzle of vitiligo
I find the mystery of vitiligo every bit as challenging and absorbing as those fictional tales but I have not always felt this way. When I was still in the midst of my own drama – wondering why on earth my skin kept developing new white spots, dreading when and where the next one would appear and hoping and praying for a cure - or anything at all that would help even a little – I was too deeply affected by it all to want to spend too much time dwelling on it. It was easier to cover it up and try not to think too deeply about it. But once my re-pigmentation was in full swing it was as if I was watching another episode of Columbo, knowing how the story would end. The solution to the mystery was in plain sight and so I could relax and enjoy watching the rest of the story play out. Suddenly I didn’t mind focussing my attention on what was happening to me because it was no longer depressing. In fact, it was thrilling to see the colour returning to my skin and I became fascinated by the process. This was when I began to read everything I could find on the subject of #vitiligo in an attempt to understand as much as possible about what causes it, ways of treating it and ways of coping with it.
What I have learned (and am still very much in the process of learning) is that, unlike the fictional detectives who solve every crime, catch every villain and tie up every loose end, a vitiligo detective’s results are not as clear cut. It seems there are always differing medical opinions, conflicting theories, inconclusive research results and – most disturbing of all - deliberately misleading and bogus claims to sort through before you can come to any definite conclusions on the subject. But I suppose this just goes to show that vitiligo is not a work of fiction. It is real life and affects different people in different ways. It is an ongoing investigation that, in all probability, will eventually culminate in a complex set of solutions, reflecting the fact that it is a complex condition.
The most effective treatment
Obviously - since there is no official cure for vitiligo yet - this is a mystery that is still under investigation by researchers and sufferers alike. It is a detective story that looks set to run for quite some time. But everything I have learned, and experienced, so far convinces me that nutritional deficiencies play a central role, maybe the central role, in the development of vitiligo and that correcting those deficiencies is currently the most effective way to reverse it and keep it at bay. Saying this may not be quite the same thing as solving the mystery and closing the case but it has certainly made a world of difference to me - and to many others who have adopted the same, or a similar, approach to their treatment.
Just why a significant minority of the world's population seemingly randomly lose patches of their skin colour is evidently a complicated puzzle that is still in the process of being solved (though I am confident it will be eventually). Until it is, I shall continue to be a vitiligo detective and hunt down every fascinating clue I can find. I shall, like the good lieutenant, keep on asking “just one more question” and keep passing on any potentially useful answers I come across in this blog. However, much as I enjoy researching and writing it, I look forward to the day when the only mysteries I try to unravel are fictional ones because vitiligo will have become a straightforward condition to cure and this blog will have lost its relevance.
My name is Caroline.