From the first moment a person notices a strange white patch appear somewhere on their skin, they start – whether they realise it or not – to develop coping strategies. There is no right or wrong way to #cope-with-vitiligo. After all, we are all different and different approaches work for different people. But it is worth being aware that some approaches are constructive whilst others may be self-destructive and counterproductive. Which of the following do you use?
1. Ignore it and hope it will go away
This is often our first reaction to seeing changes in our skin. We hope it is just one of those things – like a rash or a fungal infection and we imagine that it will clear up on its own. When we realise this is not going to happen we visit our doctor, full of confidence that a prescription for some cream or a course of tablets will sort us out. It is usually at this point that we receive a diagnosis of vitiligo, along with the customary uplifting talk (you know the one - “incurable… tough luck… just be glad it’s not cancer", etc.,etc.).
2. Cover it up and try not to think about it
This strategy differs slightly from the first one because it involves a conscious effort to hide the condition from others (and even from oneself too). If you can hide it well enough under clothing, makeup and camouflage no one will notice and you won't have to think about it either (just as long as you avoid mirrors every time you remove your disguise).
3. Keep clam and address the problem
Most non-life-threatening skin complaints are relatively simple to treat. So it is not unreasonable for our first reaction to be to visit our doctor, see a dermatologist, try our local pharmacist, health food shop, herbalist or alternative therapist or simply to reach for the medicine cabinet in our attempt to solve the problem. However, the absence of any significant help from these sources usually brings us to the realisation that, if we are going to find any real solutions, we are going to have to take charge of our vitiligo ourselves.
4. Give way to panic and despair
You know you are doing this when you find yourself checking the mirror every hour or so, looking for new lesions or wondering if the ones you spotted earlier were just a trick of the light. You alternate between crying, praying and bargaining with God: you promise never to complain about anything else ever again and to devote the rest of your life to doing good deeds if only you can wake up tomorrow morning to find your normal, even skin tone has been restored to you. You can think of little else other than your skin; you obsess over the size and number of lesions you find each day and you look at other people walking around with their perfect complexions and ask "why me?"
Our instinct for self-preservation is very strong, so it takes a lot to cause a person to want to harm themselves. But a condition like vitiligo, which can totally undermine our sense of security, confidence, even our sense of identity, is sometimes so overwhelming that it can lead to self-destructive behaviour like substance abuse or socially harmful behaviour like pushing away friends and family. This goes way beyond the occasional bout of self-pity and is something that may need professional help. There is no shame whatsoever in this and I would urge anyone who is feeling overwhelmed (like the lady who emailed me recently and admitted to suicidal feelings) to find a professional to talk to about it before things go any further.
6. Scour the internet for cures
By the time the internet had become the obvious go-to destination for the answers to all of life's questions, my vitiligo had all but gone. But I know that the first thing most people today do on receiving a diagnosis of vitiligo is go online. Spending hours on end, searching the internet for answers, trying out every remedy going and learning everything you can about the condition is, on the whole, a wonderful opportunity that was not available to previous generations of vitiligo sufferers and I am a big advocate. But, as with anything else, it is a two-edged sword that needs to be approached with common sense and moderation if you are to avoid becoming totally obsessed or, worse, falling prey to unscrupulous charlatans.
7. Embrace your vitiligo
This attitude has become much more prevalent since social media gave people around the world a way of sharing their experiences and photos and since awareness of vitiligo has increased (albeit from practically zero to just above barely visible). As coping strategies go, it is a very positive one. But, since it requires the individual to be completely open about their pigment loss and expose themselves to the scrutiny and curiosity of others, it is not for the faint-hearted. If this approach is not for you, you should not feel guilty about that. No one can tell you how you should deal with your vitiligo. Not everyone is able to embrace theirs. It only works for some but, when it does, it is certainly very inspiring to the rest of us and helps to raise awareness further.
8. Turn it into something creative
Some people are able to go one step further than simply embracing their vitiligo. They decide that, since life has handed them a lemon, they will make lemonade. #Winnie Harlow has built a highly successful modelling career around her vitiligo. #Kartiki Bhatnagar turned her vitiligo patches into beautiful art, #Keira Walcott created her own makeup range and broadcaster #Lee Thomas became a prominent vitiligo ambassador, author and motivational speaker. And these are just a few of the individuals who have turned their skin condition to inspirational advantage.
9. Draw strength from others
Drawing strength from others can be a powerful and mutually satisfying way of coping with any difficult situation. Whether our inspiration and support comes from celebrated individuals like those above, from "ordinary" vitiligo friends we encounter on forums or at meetings or from our network of family and friends, the love, acceptance, wisdom and humour of others is sometimes the best medicine we could ask for.
10. Give strength to others
This is often a natural consequence of the previous strategy and, in my experience, is even more powerful. When we look to others for help and support, we find ourselves sharing our own experiences, feelings and life lessons too and so the benefits flow both ways. Not only that, but I believe that the greatest hidden benefit of having to cope with a challenging condition is that it increases our appreciation, compassion and understanding of others. I used to think that people who claim it is better to give than to receive must be either hypocrites or saints. But now I think they just have a better understanding of how human beings work than I did.
It’s clear to see which of the above strategies are constructive and which are the opposite. And it is equally clear that adopting a constructive strategy (or maybe several) is the wise choice. But for many people living with vitiligo the psychological distress of seeing their skin colour disappearing before their eyes, and dealing with all of the consequences of this, is so severe that arriving at that choice does not come at all easily. For them, adopting a positive coping strategy is not a one-time decision: it is a journey that has its highs and lows and takes as long as it takes. It can feel like a solitary journey but I hope that everyone reading this now realises it does not have to be made alone.
Re-pigmentation and the meat-free myth
Before I get to the “meat” (sorry) of this article, I need to make a couple of things clear because the last thing I want to do is alienate anyone by my choice of title. Firstly, I am the biggest fan of vegetables you can possibly imagine and I believe that the healthiest diets consist predominantly of plants. Secondly, I am not trying to offend those readers who may eat vegetarian or vegan for religious, or other reasons of personal principle. It is just that I am frequently asked what I believe is the best diet for combatting vitiligo and one of the most frequently asked questions is whether or not you should eat meat. So, this blog is – from a purely nutritional point of view - about that very question. So now, having got the appetiser out of the way, let’s move on to the main course...
Everyone knows that veggies are good for you
Everyone on the planet must know by now that eating lots of veggies is good for you. That is not even up for discussion and, besides, I have blogged my socks off on that subject over the past few years so I won't repeat myself.
Not only does common sense tell us that this is true, but so do the health professionals, the scientific studies, the medical journals and even the history books, not to mention the billions of personal experiences shared, and blogs written, on the subject every day. Perhaps, most influential of all, is the testimony of our own bodies, which have a tendency to tell us loud and clear whether or not the food we are consuming day in and day out is giving us the right fuel to keep everything working as it should.
None of this will be news to your ears. Nutritional awareness has probably never been as widespread as it is now, thanks to the internet and our all-encompassing 24 hour global media. Yet nutrition is much like the legal system, only back to front. Just as ignorance of the law is no defence, knowledge of nutrition is no protection – unless, of course, you apply it. As the Chinese proverb says: “To know and not to do is not to know”.
For the average person in today’s well-informed society there is really no convincing excuse for not choosing a predominantly healthy diet over a predominantly unhealthy one. But things are a lot more confusing for those of us with #digestive-disorders or who suffer from chronic conditions like #vitiligo. The dietary guidelines that we need to follow in order to heal ourselves, and then maintain optimum health, may be very broadly the same as for everyone else but, it seems, there are some significant differences.
Why eating right is different for vitiligo
Too little scientific investigation has gone into the nutritional treatment and management of skin conditions – and vitiligo languishes, as ever, at the bottom of the research pile.
Of the conclusions reached, some are credible and backed by scientific knowledge, anecdotal experience or good old common sense. Others are debatable and some seem downright contradictory, as in the case of turmeric for example.
So, unless some solid, comprehensive research is conducted into diet and vitiligo, the sum of our knowledge on the subject will remain a small core of well-supported facts, surrounded by a thick (but useful, nevertheless) cocoon of anecdotal experience and educated guesswork, much of it conflicting and confusing.
In my opinion, the small core of factual knowledge we can rely on would include such indisputable advice as the importance of eating plenty of fresh vegetables, cutting out overly processed foods, reducing excess salts and sugars and drinking plenty of pure water instead of fizzy sodas and alcohol.
The thick cocoon would include, for example, advice on which types and quantities of fruits are good for someone with vitiligo. And it would definitely include the question of whether eating meat helps or hinders vitiligo recovery.
To meat or not to (m)eat?
Whilst there is plenty of evidence to suggest that the healthiest meats are unprocessed, organic, high quality and should make up no more than 20% of your food intake, I can find very little to suggest that a diet without meat is in any way nutritiously superior or even at all helpful to vitiligo sufferers. Quite the opposite, in fact.
Most healthy vegetarians remain healthy because they understand the need to consume vegetable sources of protein and supplement with vitamin B12, and its co-nutrients, to compensate for the absence of meat in their daily diet. But for those of us looking to improve a skin condition by changing our diet, it is not unusual for meat to be simply removed from the menu without such nutritional requirements being taken into account. This oversight is likely to be all the more damaging because the amino acids produced from eating protein are absolutely vital to skin health. And also because there is a well-established link between vitiligo and vitamin B12 deficiency. In addition to B12 deficiency, a lack of vitamin D is common to most vitiligo sufferers, so cutting out fish from the diet (as most vegetarians do) would carry an additional risk of making the condition worse.
Why do some people think avoiding meat helps?
If all the available facts suggest that cutting out meat is more likely to make vitiligo worse instead of better, how can it be that some people claim it helps them? I certainly don't doubt their experience. I am a great believer in the power of anecdotal evidence. My own story of recovery from vitiligo is a good example - it is based entirely on personal experience. If I had waited until scientists somewhere had conducted double blind placebo research into the effectiveness of each ingredient in the supplements I used to reverse my vitiligo before using them, I would still be waiting. And so would a lot of other people who have benefited from my anecdotal evidence. So I am a big fan of learning from the experience of others.
However, I wonder if the belief among some people in the benefits of a vegetarian diet for vitiligo have less to do with the relative nutritional values of a vegetarian versus a non-vegetarian diet and more to do with the fact that meat is harder to digest than fruit and vegetables and therefore aggravates the problems with nutritional absorption experienced by those of us with impaired digestive systems? This would explain why some individuals notice a slight improvement in their symptoms when they avoid hard-to-digest foods.
I would say that the link between poor digestive absorption and vitiligo straddles both of the categories I mentioned earlier (i.e. established fact and anecdotal experience / educated guesswork). I, for one, am utterly convinced it was at the heart of my own vitiligo and it is something that countless other vitiligo sufferers have shared with me over the past 7 years. And the relationship between digestive abnormalities, "leaky gut" and autoimmune conditions (including the serious vitamin B12 deficiency known as pernicious anaemia) is well known.
You might think that all of this is reason enough to stick to a vegetarian diet after all. But that might (if you are not careful about it) be a case of choosing good absorption of insufficient nutrients over poor absorption of sufficient ones: a classic case of Hobson's Choice. Neither option is likely to heal vitiligo. What we really need, of course, is to eat a diet that contains ALL the nutrients our body needs AND be able to digest and utilise them properly. This is why, I believe, a healthy diet plus a combination of appropriate nutritional supplementation and digestive support are so effective in treating vitiligo.
What worked for me... and what I recommend to others
The combination of nutritional supplementation and digestive support I used for my recovery consisted of two main supplements: Boost capsules (containing the nutrients most closely associatied with the tanning process) and Five a Day super-green foods (containing the broad nutritional support, plant protein and powerful antioxidant levels of concentrated vegetables). Because these supplements - combined with regular, moderate sun exposure, resulted in such dramatic re-pigmentation, this is what I recommend to others who want to treat their vitiligo naturally. And to those vitiligo sufferers who ask me about diet, my best advice, based on all of the above, is that a predominantly clean diet, consisting mainly of fresh vegetables, some fruit and (preferably) modest portions of quality meat and fish (or alternatively vegetarian or supplemental protein, vitamin D and B vitamins) is likely to be the best way of supporting a successful re-pigmentation protocol.
Creating Real Pigment without the Sun
Summer is now in full swing, a fact that may or may not be cause for celebration if you have #vitiligo. Whether this season fills you with joy or with frustration, I hope that you will feel encouraged by some news I shall be referring to later in this post on the subject of #tanning.
But first, is it me, or are the months going by faster and faster? (OK– I know it’s an age thing.) Another World Vitiligo Day has come and gone and here we are already a week into July. Our summer so far in the north of England has been a mixed bag of changeable weather, which has developed into a strange pattern over the past week or so. Each day starts out wet, windy and cold (and I mean winter-cold) and then, bizarrely, at around 3pm, it blossoms into a bright, sunny afternoon, becoming progressively hotter as the evening approaches. A classic case of all four seasons in one day! This calls for several different outfits to suit the evolving conditions. Swathed in layers of winter woollies until mid-afternoon, I gradually peel these off one at a time, eventually changing into shorts, a vest top and flip-flops.
At last I am loving summer
These changes in the weather are unusual and extreme for the time of year but they are not nearly as dramatic as the change in my attitude to them. Until a few years ago I would have welcomed cold summer weather because it allowed me to cover up my white patches and feel “normal”. It meant I didn’t have to be reminded constantly of my two-tone skin because I could hide it under layers of clothing and pretend it didn’t exist. It’s not that I didn’t love to see blue skies. I longed to be able to enjoy carefree, sunny summer days, like all my friends and family did, but my heart used to sink at the prospect of warm weather because I was deeply unhappy in my own skin. But now, having regained most of the pigment that I had lost over my 50 years of vitiligo, I am the first to moan about the unseasonably chilly rain and (who would have thought?) the first to stretch out on a lounger at the merest glimpse of the sun’s rays breaking through the clouds. At last, I am loving summer, beach holidays and being outdoors at every opportunity as much as when I was a little girl – more so, even, because now I profoundly appreciate those things I missed out on for so many years.
Vitiligo can cause you to feel all sorts of emotions but despair does not have to be one of them.
The reason I am sharing this shift in my perception of summer is in the hope of spreading a little sunshine of my own and dispelling some of the clouds of doom that may be hanging over you if your vitiligo is getting you down. I remember very well how frustrating and downright depressing this time of year can be if you are trying to cope with relentless pigment loss. It is a time that can evoke feelings of dread and even despair, feelings that are easier to bury during the winter, but that surface every time swimming and barbecue season comes round again.
The message I am keen to spread, through all my blog posts, is that although vitiligo is bound to cause you to feel all sorts of emotions, #despair does not have to be one of them. When doctors tell you there is nothing that can be done about vitiligo and when the years pass with no breakthrough in the search for a cure, it is natural to feel yourself losing hope. But I believe there is every reason for vitiligo sufferers to feel hopeful.
Years ago most patients had no choice but to take the doctor’s word as gospel and the most we could do to verify the information we were given was to ask for a second opinion. Today the internet gives us access to countless stories of people who have improved their vitiligo in a variety of ways and countless more scholarly articles and scientific papers that document the advances being made in medical research. This means that not only can everyone with vitiligo try known treatments until they find the one that works best for them, but we can also educate ourselves on the causes of the condition and progress towards a permanent cure – something that I now believe is a certainty.
What form such a cure will take is still up for debate. But, given the relatively small amount of funding that goes directly to vitiligo research, the breakthrough may well come as a spin-off from other medical advances, possibly in the field of cancer research and genetics. Last year’s strides forward with T-cell therapy are just one example of this.
SIK inhibitor could lead to a cure for vitiligo and other autoimmune conditions
Another milestone, reported in the media just last month, was brought to my attention by a vitiligo friend (thanks for flagging this story up, David :)). Scientists at Massachusetts General Hospital have come up with a novel approach to preventing sun-induced skin cancer by developing an experimental topical, small-molecule drug called a SIK inhibitor that produces a genuine “suntan” but without the need for UV exposure. If the drug is developed successfully and becomes commercially available, it could have exciting implications for vitiligo sufferers, as well as drastically reducing the number of skin cancer cases by providing effective sun protection to all skin types. Whilst the research paper makes no mention of vitiligo, it does indicate that the drug is even capable of developing a dark tan in skin types with red hair, despite the fact that redheads carry a genetic mutation that inhibits tanning. Extending this discovery to the treatment of vitiligo seems, at least to me, to be a logical spin-off. And this patent (bearing two of the names from the Massachusetts Hospital Team) on SIK inhibitors for use in treating inflammatory and/or immune disorders, including vitiligo, would suggest that moves are already being made in this direction.
It is too soon to say whether or not this particular approach will be the one that provides the long-awaited #cure-for-vitiligo. But early indications look hopeful and, if not this, then some other line of research will inevitably bear fruit. So, my recommendation in the meantime is to enjoy the sunshine the best way you are able, be optimistic about whatever vitiligo treatments or strategies you may be using and, above all, remind yourself that a vitiligo cure has never been as close as it is right now!
A more holistic approach to vitiligo
Doctors the world over are fond of telling us that #vitiligo-is-incurable. I get the impression that many of them have memorised their lines from a Common Book of Incurable Diseases and How to Deal With Them – or rather, not deal with them. The relevant chapter is probably called How to persuade vitiligo patients to shut up and suck it up and the subheadings include There is no cure, so don’t bother; Stop whining - it won’t kill you and Don’t talk to me about nutrition!
I know, I know. That’s a little harsh. But I feel strongly about this. I do realise that not all doctors quote from that particular book. But therein lies another problem for vitiligo patients. Medical opinion – and, more crucially, levels of medical training – on the subject of vitiligo are so unreliable and inconsistent that going to see your doctor is like a lottery. And the only thing you can be reasonably sure of is that your chances of winning a prize of any real value are slim.
I really think it is high time that the mainstream medical profession brought its general practitioners and specialists up to date on current best practice in addressing vitiligo and worked out a consistent protocol for helping patients who come to them with this neglected and underfunded condition. It is simply not good enough that people with a health issue that, for many, is frightening, depressing and psychologically devastating have to take pot luck on whether or not their family doctor or dermatologist will be well informed, or even remotely sympathetic, about it. It is not acceptable that so many people leave the doctor’s office confused and discouraged because of a lack of helpful information, a lack of support and an unwillingness on the part of the professional to even try to get to the bottom of their complaint. Many vitiligo patients are not even offered a referral to a dermatologist. And those who are often encounter similar indifference or negativity from that specialist too. (I know this is not universal but it is, I’m sad to say, all too common.) Other, more well known health conditions would not be met with such a dismissive response, so why should vitiligo be different?
I am not medically trained, so I accept that I am not remotely qualified to tell the medical profession how to do their job. But, like most people, I have been a patient on numerous occasions and I speak to a lot of others who have fallen foul of the way in which the system currently works (or doesn’t). In a way, you could say I owe my recovery to the ineptitude of the medical establishment. Their total lack of support led me eventually to experiment with nutritional treatment on my own and this is what almost completely restored my normal skin colour. But most people – reasonably enough – turn to their primary health provider when they first notice the symptoms of vitiligo. They deserve to have access to a doctor who is current, well informed and constructive. And they deserve to be told all of the available options and given the opportunity to see a specialist or ask for a second opinion.
But what kind of specialist does a vitiligo patient need?
A major reason why mainstream health care has never properly got to grips with addressing the needs of vitiligo patients is because it is a condition that defies being put into a neat and tidy category. Its root cause is still unclear but most evidence suggests it is multifactorial (involving many different factors – i.e. it's complicated!) For starters, there are several different forms of the condition (segmental, non-segmental and occupational / chemical). The majority of cases are thought to involve autoimmune disease, but not all of them do. No single treatment works for everyone. And the causes (plural?) appear to be a combination of genetic, digestive, environmental, hormonal, allergic, etc, etc, etc… In other words, it involves several of the body’s systems: just how many is still a matter of debate. In other words, if ever a condition required a holistic approach, it would be vitiligo. And that is just what our western health care systems are not geared up to provide.
If you are lucky, you can get a referral to a dermatologist. But how appropriate is that? You don’t have to read much of the available research into vitiligo to realise that the white patches are the last and only visible symptom of a disease process that starts inside the body and involves the digestive and endocrine systems at the very least – probably also the lymphatic and nervous systems too. So how many experts are there who are specialists in all of these disciplines? The only individual specialists who would stand a chance of taking a wider view of vitiligo are probably the researchers who, in most cases, do not routinely see patients at all. What the vitiligo patient really needs is a multi-disciplinary approach.
What can be done to improve things?
The current situation may sound hopeless. It is certainly challenging. But I do believe that an overhaul of the way in which vitiligo patients are handled is possible and would certainly be helpful. If new procedures were introduced that included routine testing for all the known factors in vitiligo and referrals made on the basis of the results, patients would be far more likely to get access to the most appropriate specialist expertise and therefore to the treatments that would most likely benefit them. Based on my own experience of vitiligo-recovery, I believe that the most effective treatments available so far all involve nutritional therapy. So, in an ideal world, all vitiligo patients who go to their primary care doctor would then be routed through the secondary care system, being referred from one relevant specialist to another, as appropriate, according to the results of their various tests. And one of these should, in my humble opinion, be a nutritional specialist who would then devise a programme for each patient that would address the particular type and source of their pigment loss.
Realistically, I do not expect we shall see anything like this being implemented by our mainstream health systems any time soon (and maybe never!). But any improvement to the existing quality of patient care would definitely help. The need for a multi-disciplinary approach to vitiligo research has already been documented, as this article shows: Valle, Y., Lotti, T. M., Hercogova, J., Schwartz, R. A. and Korobko, I. V. (2012), Multidisciplinary approach to R&D in vitiligo, a neglected skin disease. Dermatologic Therapy, 25: S1–S9. doi: 10.1111/dth.12009 but it seems to me that the need for an equivalent rationale to clinical practice has simply not been recognised. Until it is, most vitiligo sufferers will continue to receive inconsistent and unreliable support from their doctors and face the choice of either putting up with the condition or, like me, finding their own solutions and treating themselves.
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.
Vitiligo on TV makeover show
Earlier this month I watched Katie Piper’s Face to Face, a #TV documentary on Britain’s Channel 4 presented by a former model, in which she invited women with a variety of face-altering skin conditions to have a makeover. What made this programme so different from all the other makeover shows I have ever seen was that Katie herself has severe facial scars which she sustained several years ago when she was the victim of an acid attack. And, unbeknown to her guests, each of the make-up artists on the show shared the same facial condition as the person they were making up. The whole show was absorbing but I was, of course, particularly interested in the #vitiligo-makeover.
The big reveal
The most dramatic twist of all was "reverse big reveal” at the end of each makeover when, to the surprise of the person sitting in the make-up chair, the artist wiped off their own cosmetics to reveal that they too had the same condition. The effect of this was both moving and uplifting because it was so unexpected and, in a strange way, so intimate. This was definitely not your average makeover show (although there were some useful tips for anyone interested in cosmetics and camouflage) and it was certainly not about glamorous professionals helping to transform poor, needy victims by teaching them to hide their scars. It did show that make-up is a potentially empowering, but completely personal, choice for anyone whose face is different from the accepted norm. But, much more importantly, it showed the power of shared experience and mutual compassion between the invited guests and their make-up artists (some of whom were self-taught, rather than professionals). Seeing their reactions, I was reminded of the tremendous power of mutual support. Because, no matter how kind and well-intentioned a person may be, it takes someone who has been through a face-altering experience to truly understand how this makes a person feel.
One shared experience: two different ways of coping
The show also highlighted the different ways in which individuals cope with their skin condition. Rochelle, the guest with vitiligo, had come to terms so completely with her two-tone skin that she actually found the cosmetic transformation into airbrushed perfection rather unnerving, whereas Nancy, the artist who performed the makeover, relies on cosmetic camouflage to give her the confidence she needs each day to feel comfortable in her own skin. I found myself in awe of Rochelle's attitude but I completely related to Nancy's because my reaction to having vitiligo had always been to hide it at all costs and every time I removed my make-up and looked in the mirror it use to make me miserable. For me, the most powerful part of their interaction was seeing both of them instantly empathise with the other, whilst accepting that they each had completely different, yet equally valid, ways of coping on a daily basis.
Exposure and coverage
It is good to see vitiligo being shown and discussed in such an open and constructive way on mainstream TV. I am guessing that this will have been the first time that many viewers have ever seen or heard of vitiligo. I have always enjoyed a good play on words, so it strikes me as strangely fitting that a condition that presents each individual with a choice between exposure or (cosmetic) coverage should be in such need of both media exposure and media coverage! There is still a shockingly poor level of awareness and understanding of it, compared to other skin conditions. This widespread ignorance is one of the reasons so many people choose to cover their patches up (which, of course, helps to perpetuate that ignorance). After all, even if you are not particularly self-conscious, who wants to keep having to explain to people what the white spots are? Isn’t it just simpler to hide them and pretend they aren’t there? That’s how I used to feel before I re-gained my lost pigment and, I have to admit that it is probably how I would still feel today. It was my coping strategy then and I don’t suppose I would be much different now. But I do think that the more exposure vitiligo has in the media, the easier it will become for each person to decide for themselves, with no pressure from others, whether they want to cover up or not.
It seems to me that Katie Piper herself has developed a wonderfully positive and balanced attitude towards the role of make-up for those with skin imperfections. At the start of the show, she admits that, like anyone else, she worries about her appearance but, on the subject of make-up, she says she has come to see it as a friend she can call upon when she needs it but never be dependent on.
Having watched the show, I was prompted to find out more about its inspirational host and what impressed me the most when I read Katie's story was the fact that she has clearly emerged from her own utterly horrifying ordeal a stronger and more successful person with a heartfelt desire to use her painful experiences to help others overcome their physical, and emotional scars too.
If you did not see the show it is available to view on this link:
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.
Just like many other medical conditions, #vitiligo shows no favouritism. It affects all ethnicities, old and young, rich and poor, male and female alike. It takes no account of whether or not you are a famous or a good person, whether or not you deserve to have additional problems in your life. And it certainly doesn't care whether or not you feel sorry for yourself – which, if we are honest, we all do from time to time. It’s just one of those things that happens to some people and, depending on your personality and attitude to life, it can either be (multiple choice coming up...you choose the description that best fits you):
Whatever category above you fall into, I am guessing there isn’t a single one of us that hasn’t ever, at least once, asked the question “why me?” So I would like to suggest 3 answers that I hope will help.
The first answer to this question should really be, “why not me?” The question is, after all, a pointless one. In fact, it is entirely the wrong question. It assumes that fate chose to afflict the wrong victim. It suggests that I would prefer someone else to have been cursed with unwanted, unexplained white patches all over their skin. Or, even more nonsensically, it suggests that I might have preferred to have cancer or been paralysed in a traffic accident. It implies that suffering is fine – as long as it happens to someone else! Well, suffering is not fine, no matter who is doing the suffering. But, sadly, it is a fact of life. Most of the time, when we ask ourselves (or fate, or God) “why me?”, we know deep down that we are just feeling sorry for ourselves (which is OK, by the way – at least, it is human). The main trouble with the question, though, is that we are powerless to answer it. And every time we ask it seems to reinforce that powerlessness.
So, my second answer to the question "why me?" is that we should ditch that question for now and ask a different one - one that we have the power to answer. I have come to realise that the most empowering question a person with vitiligo (or any other affliction or adversity, come to that) can ask is "what can I do about it?" And the answer to that question is - "a lot!".
The sad thing is that comparatively few vitiligo sufferers are aware of just how much they can do to reverse their #de-pigmentation and revolutionise their health and happiness. And it's no wonder when you consider how little accurate information is available, not to mention the misinformation that often comes at us, intentionally, from unscrupulous con-merchants and, unwittingly, from well-intentioned but ill-informed doctors.
For nearly 5 decades I believed what I had been told. I believed that vitiligo was a life sentence, that it was a waste of time trying to treat it and that it would only ever get worse. It's no wonder that this prospect caused me to feel sorry for myself from time to time. I am sure I would have continued to believe these things if I had not, more or less accidentally, becomeliving proof that they were all utterly incorrect. If you have read my story of vitiligo re-pigmentation you will know that a somewhat half-hearted experiment with nutritional supplementation and sun exposure seven years ago unexpectedly and wonderfully reversed vitually all of the 80% pigment loss I had suffered by that point in my life. It is too early to say categorically that this recovery is permanent of course because only seven years have passed since then. But I take the fact that I have had no relapse and have only continued improving since then as a good sign :)
In the previous section of this blog I recommended ditching the original question because it was not one we have the power to answer and because it generally encourages self pity. However, there are times when the question “why me?” can be a valid one to ask and actually does have a meaningful answer.
Once I knew, from personal experience, that vitiligo was not the hopeless condition I once thought it was, I finally felt able to return to that initial question but to ask it in a completely different way - a way that led me to an empowering and uplifting third answer. And that answer to "why me?" is: “so that I can empathise with others who are going through what I went through”. Whether you think about it logically - or emotionally - there can really only ever be one helpful answer to the question “why do apparently random bad things happen to certain people”. And that is so they can overcome them and also help other people do the same.
This third answer was the primary motivation for starting my vitiligo blog soon after my re-pigmentation and is the reason I now spend so much of my time learning about what made it happen, reading up on research and corresponding with vitiligo friends. It’s not that I set out with any master plan to provide vitiligo support to others or to become any kind of information source on the subject. It has just naturally developed out of my extreme excitement and gratitude at having recovered to such an amazing extent. And, it has to be said, that this was fuelled by frustration (at times, to the point of anger) that so few genuinely helpful and accurate facts are available to people living with vitiligo to help them ask the right questions and to find the answers that do exist but that are still not common knowledge.
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.
My name is Caroline.