as effective therapy for vitiligo
There was a time when any #vitiligo patient who dared mention the word “vitamin” in the presence of their doctor would have earned themselves a patronising smirk and a dismissive assertion that “no evidence exists to show #nutritional-supplementation has any effect on the condition whatsoever”. Sadly, that time is not yet firmly in the past. But I fervently hope, and believe, that an excellent new publication called “The Use of Vitamin Therapy for the Treatment of Vitiligo” will help to consign this kind of reaction to history.
The woeful ignorance of most mainstream doctors on the subject of nutritional therapy for vitiligo was clearly a key motivation for the book's author, Audrey VanStockum @Recouleur. As she explains in her preface, she suffered with vitiligo and psoriasis for years, was misdiagnosed for both conditions and visited a total of 23 clinicians over a 14 year period in her search for answers to her skin problems. She realised that her negative experience highlighted “a paucity of information and specialized training” and it puzzled her that so few healthcare providers seemed to have any knowledge of effective vitiligo treatments, even though published research on the subject - dating as far back as 1945 - was openly available. Her frustration at this state of affairs led her to start doing her own research into the subject of nutritional therapy, trying various vitamin and mineral supplements herself and observing her responses. Her wide reading on the subject and experiments in self-treatment resulted in some re-pigmentation and, ultimately to the creation of her own dietary supplement called Recouleur.
Audrey's expertise in the area of nutritional therapy is a wonderful example of how frustration can sometimes be the mother of invention. The idea that we need to take responsibility for our own vitiligo treatment is a familiar one for many of us because we too have repeatedly met the same brick walls when trying to find constructive help from the medical community. Like Audrey, some of us will have wondered why our doctors have apparently never come across any of the research that we ourselves may have seen whilst trawling the internet for solutions and why it is that they are so resistant to the suggestion that nutritional therapy should be prescribed for vitiligo. In fact, I have sometimes advised vitiligo friends to avoid the subject of food and supplementation completely when visiting their doctor because I could predict the likely reaction and did not want anyone to rain on their parade. My view was that the proof of the pudding was in the re-pigmentation that people were achieving through supplementation and that trying to persuade the medical profession to recognise these successes was futile. But that was because it was not a straightforward matter to have the relevant research at one's fingertips during the typical doctor-patient consultation. Well, that was before Audrey's new publication, which – in addition to its main aim of informing vitiligo sufferers themselves - could also easily be used as a way of presenting their doctors with the nutritional facts, all in one well researched and clearly written 40-page booklet.
One of the strengths of “The Use of Vitamin Therapy for the treatment of Vitiligo” is, in my opinion, the fact that it strikes the perfect balance between scientific detail and simple explanation so that it makes suitable reading for anyone, regardless of whether they have a scientific background or not – and regardless of their prior understanding of vitiligo. The author assumes nil knowledge of the subject, explaining what vitiligo is and the processes thought to be involved in its development. She then reviews key vitamins and minerals used by the body to produce skin pigment and describes the role played by each one, as well as the adverse effects of deficiencies. And, crucially, she backs up all of the information with relevant research studies. As I read through the book, I found references that I had not come across before, as well as some that I had seen but had since lost sight of in the vastness of the internet. So, it was extremely useful to have such a comprehensive overview of the subject and its associated literature all in one place and set out in such a clear and concise way.
I also found myself saying (aloud) “YES!!!” when I read the chapter on what Audrey has termed “The Three-Prong Approach” to vitiligo treatment because her view on this makes total sense and resonates with my own thoughts exactly. This approach states that that the most effective vitiligo therapies involve one component from each of the following categories:
In this way, the condition is being addressed from the inside out as well as the outside in and is benefiting from UV exposure (nature's way of stimulating pigment) as well as active, therapeutic ingredients (to treat the condition).
In my experience, most doctors only ever try to treat vitiligo “from the outside in” (i.e. they might use one, or both, of categories 2 and 3). Many do not even advocate any treatment at all because they claim that improvements are minimal and, at best, temporary. However, I am convinced that this is because they omit category number 1. They neglect to include nutritional therapy in their treatments. It stands to reason that external therapies may help treat skin symptoms but only internal ones can hope to address the root cause and prevent symptoms from recurring over the longer term.
The medical profession has been slow to pick up on the findings of research done as long ago as the 1930s and 1940s that clearly pointed to digestive deficiencies as being at the root of vitiligo. Audrey VanStockum draws on the findings of this research, further supported by anecdotal evidence of vitiligo sufferers whose pigmentation improved with improvements to their diet.
There is no question in my mind that correct nutritional #therapy can reverse vitiligo. Audrey and countless others (including myself) are living proof of the fact. But our modern health systems are heavily biased toward pharmaceutical and surgical solutions, no doubt because these are the areas of research that tend to receive the most funding. Concepts of healthy eating and nutritional supplementation as a means of restoring health receive very little serious attention and therefore do not produce the amounts of clinical research data demanded nowadays by the medical establishment. This is frustrating but perhaps it is understandable. Sophisticated drugs, stem-cell therapies and ground-breaking surgical procedures are needed for all kinds of life-threatening conditions that afflict the human race and they are super-expensive to develop. So this is where the funding tends to go. (And, if we want to be cynical about it, these are the treatments that can be patented and become lucrative for thedrug companies and professionals who administer them. Whereas foods and nutritional supplements already exist and are widely available.) What is lacking is not simply new clinical data to support nutritional therapies but an awareness and acknowledgement on the part of doctors that this approach is sometimes the most effective way of treating certain conditions, and that one of those conditions is vitiligo. And, to be fair, there is another requirement, if things are going to change: and that is individual patient responsibility not to be over-reliant for their own state of health on the men and women in white coats. We need to take charge of our own recovery.
In the final paragraphs of the book, Audrey puts all of this in a nutshell: she says, “First, patients need to be their own health advocates and seek solutions for treatable conditions instead of accepting any answers physicians provide, such as “Nothing can be done,” which is said all too frequently to vitiligo patients. Second, physicians need to be open to complementary therapies for treating highly challenging diseases that do not always respond to conventional treatments. Third, more robust studies are needed to analyze the role of vitamins in treating vitiligo; and fourth, dermatological residencies should include a tract on the role of nutrition.”
Obviously, there is far too much detailed information in this excellent publication for me to do more than scrape the surface in this blog. So, I would recommend it as essential reading for anyone, from any background (scientific or not) who wants to understand the relationship between nutrition and vitiligo and how nutritional therapy can help to treat this complex and frustrating condition.
Congratulations, Audrey - and thank you for sharing your knowledge!
for vitiligo and for general health
Having lived with widespread #vitiligo for almost 50 years, I am eternally grateful for my re-pigmentation and will never take my recovery for granted. Since this life-changing event came about as a result of taking nutritional supplements, I have to suppress a snort of derision every time I hear a doctor or a newscaster announce the latest opinion from the medical community, claiming that supplements are not necessary as long as you eat a “well-balanced diet”.
For a start, no one nowadays eats a well-balanced diet, unless they live in a remote area of the world with exceptionally good soil and unpolluted waters and produce their own organic vegetables, fish and meat. And, more to the point, not everyone enjoys that mythical state of “normal health” to which such a well-balanced diet would be sufficient. Some of us have chronic conditions which involve serious nutritional imbalances that have developed over many years. And it takes more than a plate containing a portion of each food group every day – important though that is – to rectify these imbalances.
It's official: supplementation is recommended
So, this week's research findings, confirming further benefits of vitamin D supplementation, should have come as no surprise. But surprised I was, so jaded am I by the constant refusal of most western health systems to acknowledge the importance of nutritional supplementation as a serious alternative to drugs. It is well-known that #vitamin-D deficiency can lead to bone diseases like rickets and osteoporosis but the new research, conducted at Queen Mary University of London and published this week in the British Medical Journal, confirms that vitamin D supplementation is not only helpful for bone health – as we all knew - but is also a safe and effective way to boost the immune system, helping to prevent upper respiratory infections like colds flu and even pneumonia. Since very little vitamin D is naturally available in our food (relatively small amounts can be found in oily fish, egg yolks, cheese and some types of mushrooms), the researchers conclude that supplementation is advisable and that the benefits of this are even on a par with the flu vaccination.
This information is likely to be of obvious interest to everyone, but since vitamin D plays a role in the process of skin pigmentation and most vitiligo sufferers have subnormal levels of it, it is yet another reason why those of us with a history of vitiligo should ensure we have sufficient intake of this nutrient. Moreover, the suitability of vitamin D supplementation as a real alternative to the flu jab is of additional relevance, since experts tell us that vaccines can actually be counterproductive for people with autoimmune conditions.
It is not known whether vitamin D deficiency is a cause of vitiligo or whether it is a consequence, especially in light of the fact that vitiligo sufferers are typically less likely to boost their levels naturally through the normal channels of sun exposure (since most avoid the sun) and may not absorb much, if any, through their diet (since many have poor digestive absorption). Either way, supplementation seems to be the only way of ensuring an adequate uptake.
So, whilst I am now free to enjoy healthy doses of sun-bathing whenever I go on holiday (or when the weather gods look kindly on us here in the UK), I still take additional vitamin D, in the form of a spray which is easily absorbed into the blood stream and I also get some with my regular top-up courses of Boost, the key supplement I used to re-pigment.
It's what vitiligo is all about
It's a fair bet that most people would automatically associate the word “inflammation” with swollen joints, insect bites or infected wounds. But #inflammation can be completely invisible to the naked eye and it may or may not be accompanied by pain. It can occur in any organ and any cell in the body and it is involved in every type of illness and injury. In fact, you could say that inflammation = disease (in the real sense of the word, i.e. dis-ease) and an absence of inflammation = health.
As a non-scientist, I tend to think in descriptive terms about such things. A medical professional would be able to explain the inflammation process in a great deal of scientific detail, whereas I simply visualise it as an interruption or breakdown in an organism's natural balance. I'd be the first to confess that my description is vague and unscientific compared to a technically accurate one but it describes exactly the same reality and hopefully conveys it in a way that is easier for most of us to process.
There are many types of inflammation and they are not all necessarily cause for concern. For example, a sprained ankle, a flea bite or a bruise would all involve temporary, localised inflammation. A bad hangover or a bout of food poisoning would affect the whole person and, hopefully, not occur too often or last for very long. A case of flu can cause severe inflammation throughout the body that might last for several weeks. In all these instances, though, the inflammation is relatively short-lived because most people's internal systems (immune, digestive, circulatory, lymphatic etc.) are robust enough to do their job of righting the good ship “Healthy Human” whenever she hits stormy weather.
But a recurrent headache, ongoing joint pain, persistent indigestion, repeated allergy flare-ups or skin disorders are all examples of chronic inflammation that are highly unlikely to do anything other than continue to get worse unless action is taken to break what has become a vicious cycle of tissue damage. Left unchecked, such chronic inflammation typically leads to ever worsening general health as the constant degradation of the body's normal balance perpetuates a destructive chain reaction that produces more and more diverse symptoms, usually culminating in life-threatening illness. To make matters worse, the medication that is prescribed by most well-meaning but mystified doctors along the way, in their attempt to treat each new symptom as it arises, produces side-effects (as drugs invariably do). These side effects add to the burden of inflammation in the body so that, by the time the individual has descended into multiple mystery syndromes, full-blown autoimmune disease or any number of inter-related life-threatening conditions, finding and correcting whatever initially interrupted the balance of their good health would be like trying to find a hypodermic needle in a haystack full of other hypodermic needles under a pile of pills inside a locked barn in the middle of nowhere… without a map!
Modifying the immune response
It is well established that an inflammatory response is at the very heart of the development of #vitiligo and so some existing treatments, as well as current research into new treatments, focus on this aspect of the condition. They attempt either to neutralise the trigger for the inflammatory response - or else to interrupt, or prevent, the response in some other way – in the hope of stopping the de-pigmentation process in its tracks. For example, immune-suppressive and immunomodulator agents have been used (with varying results) to lessen the immune response to triggers but most of these have so far produced limited success with vitiligo and many unwanted side effects.
Tacrolimus (Protopic Ointment) and Pimecrolimus (Elidel Cream) are probably the best known, most effective and safest examples of this kind of treatment. They are proven to reduce inflammation but the side effects cited for both Protopic and Elidel are enough to make anyone think twice about using them. And the same can be said of corticosteroids like Triamcinolone, Hydrocortisone topical and Clobetasol Propionate.
Recent findings suggest that anti-inflammatory drugs developed for the treatment of rheumatoid arthrtis, like Tofacitinib (Xeljanz ) and Apremilast (Otezla) could potentially be of therapeutic benefit to vitiligo patients but the evidence so far is sparce and so much more research would be needed before coming to a definite conclusion on this.
Targeting free radical activity
Other treatments focus on the oxidative stress that is a feature of inflammation in vitiligo. These include pseudocatalase, which has been used in combination with Dead Sea climatotherapy or UVB exposure for the treatment of vitiligo. This treatment has enjoyed mainly positive reviews, a good safety record and very encouraging results but it is not without its detractors, with the authors of this paper even claiming it to be totally ineffective.
Another treatment I was alerted to recently involves the topical application Prostaglandin E2 (PGE2) as a treatment for vitiligo because of its stimulant and immunomodulatory effects on melanocytes but, whilst results were encouraging, it is still considered to be at the experimental stage. And yet another experimental treatment is Afamelanotide (Scenesse) which seeks to re-pigment vitiligo by preventing the inflammatory response to UV light.
Whilst the potential of these therapies for the future treatment of vitiligo is encouraging, their efficacy and safety have not yet been clearly established and, since we are talking in most cases about drugs with known side-effects (= more inflammation) and inconclusive results, my choice is still to reach for the contents of nature's own medicine chest when it comes to combating the inflammatory response involved in the de-pigmentation process.
Topical, dietary and supplemental antioxidants are known to reduce inflammation and restore acceptable levels of free radical activity in the body and they do this without fear of side effects. Applying naturally anti-inflammatory substances to the skin, like coconut oil or aloe vera is safe and can be effective as part of a wider nutritional and lifestyle protocol in treating vitiligo. Similarly, the use of custom-made vitiligo treatments like Vitix Gel and Vitix tablets, both containing natural antioxidant extracts that are proven to combat free radical damage without any known risk of adverse reactions seems to me to be a safer and more effective way of treating vitiligo, or indeed most chronic, inflammatory disease than taking unproven, experimental and potentially dangerous drugs and ending up buried in that drug-infested haystack inside a locked barn in the middle of nowhere… with no map.
Certainly, using nutrition as medicine to heal inflammation by restoring balance to my whole system, rather than working my way through the doctor's prescription pad with each symptom I developed, worked really well for me - virtually ridding me of all my white patches over a period of about 18 months. Not only was this result more dramatic than any I have found in any of the literature on pharmaceutical research to date but it was achieved without any adverse effects and, in fact, came with the added benefit of better general health too. No doubt this all-round improvement illustrates the point that, just as chronic inflammation can be a downward spiral, reducing inflammation by restoring balance throughout the body is an upward one.
“Season of mists and mellow flu-fulness ...”
It's that time of year again. The days are getting shorter, the air has a chill to it that holds the promise of frosty days and bitter nights to come and the trees are shedding their golden glory, forming satisfyingly crunchy carpets underfoot. Well, so much for the poetic beauty of autumn. But a more prosaic reminder that we have reached this point in the calendar is the abundance of public service posters and announcements encouraging everyone at particular risk of health complications to book their annual #flu-jab.
To jab or not to jab: that is the question
This poses, in fact, not just one, but two tricky questions for those of us who have #vitiligo (or any other autoimmune disease). 1) Does vitiligo count as one of those health conditions that carry a greater risk of flu-related complications? And 2) do any such risks outweigh those that might be associated with the flu vaccination itself? These are questions I ponder at this time every year because, even though my vitiligo is almost completely re-pigmented now (after spreading steadily for 5 decades) I know that I am still prone to certain de-pigmentation triggers and therefore cannot afford to be complacent.
So far, I have always chosen to run the risk of possibly catching flu over the potential risks of being vaccinated. I have never been quite sure whether this is the right decision – especially as I do usually go down with the flu once each winter. Nevertheless, I have continued to make that same choice, mainly because I have never noticed any adverse effect on my vitiligo as a result of getting the influenza virus, whereas most other #vaccinations and inoculations I have ever had in the past have left me feeling unwell. I am aware that this could be either coincidence or even imagination on my part and you could, quite reasonably, argue that catching the flu is likely to make me feel much more unwell. But my reluctance to have the jab is based on more than just a vague perception. I base it on a simple exercise of weighing up the potential pros and cons and realising that I am the only person who can make the decision because the doctors simply don't know whether it is wise for someone with vitiligo to have the flu jab or not.
Of course, the advice routinely handed out to anyone asking this sort of question is “ask your doctor”. But, since – in my experience - most doctors in general practice know less about vitiligo than the patients who have it, all you would get would be a well-intentioned opinion, based on limited knowledge. And, judging by everything I can find on the subject, asking a dermatologist would probably not be very much more helpful either. The fact is that the jury is still out on the subject of whether patients with autoimmune diseases should receive vaccinations and, to some extent, the jury is still out on the subject of whether vitiligo is a classic autoimmune disease in any case. So, where does that leave you and me? I think it leaves us to look at whatever evidence we can find and make up our own minds.
The battle ground
When it comes to vaccinations (not just the flu jab, but all vaccinations) feelings run high and opinions differ widely, both within the mainstream medical profession and the wider health system, as well as among the general public. No doubt some opinions are based on emotion and instinct, some on vested interests and some on a lack of accurate information. So this can make it difficult to get to the real facts – at least, the known facts, since the field of #immunology is still being explored and research still has a way to go before all of the questions we have about the immune system are answered.
Much of the controversy around the safety of vaccinations revolves around the question of infant inoculations. One camp says, quite rightly, that infant vaccination has saved millions of lives since it was introduced and has helped to eradicate a number of destructive and deadly diseases from the planet. When you look at the statistics, this is undeniable. Equally undeniable, though, is the fact that definite cause and effect has been established over the past few decades between significant numbers of individual cases of illness, and even fatalities, following vaccination. This is why the anti-vaccination camp argue that the body's own immune system should be left alone to do its job of protecting against infection and not be tampered with. From what I have read about infant vaccination, this view makes a lot of sense because to interfere with an infant's immune system while it is still in the process of developing does seem counter-intuitive and there appears to be quite a bit of credible scientific evidence to support this view. However, the question of infant vaccination is so complex and emotive that I want to confine this blog mainly to adult vaccination, since I am looking at this subject in the context of vitiligo, a condition that is usually not apparent until a person has past the infant stage. (But, I will refer briefly to the implications of infant vaccination later.)
10 known facts
I have read a lot about this subject while preparing this blog and realised what a minefield it is. So, rather than try to present all the research and the various conclusions and their implications in detail (which would require a skill set I don't have and would fill a very fat book into the bargain) I have decided to distill the known facts that I have been able to find into a very simple 10 point overview and draw some conclusions in relation to the question of vaccination for people with autoimmune disease in general and vitiligo in particular. I have then listed a number of references at the end to enable you to see how I came to my conclusions.
In coming to my own conclusions, I needed to filter out some of the misleading and biased information to be found on the topic of vaccinations online. I recognise that some doctors and researchers may be swayed by vested interests and personal reputation. And, as regards the views of non-scientists, there is a lot of well-intentioned but often ill-informed popularist hype on the subject.
It was hard for me not to get swept along by some of the views of the anti-vaccine lobby because I am a great believer in the power of nature to promote good health, so I instinctively feel that the immune system should be left to do its thing so that immunity to infection can be developed naturally over the course of a lifetime. My own, perhaps simplistic, view is that vaccinations would probably not be necessary if people all ate correctly from infancy to old age and lived in healthy environments, drank pure water and avoided environmental toxins. (But, of course, this is not the case.) And, for those of us who are prone to autoimmune disease, I believe that the answer should not be to boost or suppress the immune system artificially, but rather to balance it naturally.
However, putting my instincts on hold temporarily, I wanted to get to the bottom of the science behind the whole question and the best expert resource I found whilst I was reading up on this subject was Professor Yehuda Shoenfeld, founder and head of the Zabludowicz Center for Autoimmune Diseases attached to Tel-Aviv University, Israel. Based on his findings, as well as on everything else I have read so far, my own conclusion is that I shall be sticking to my policy of avoiding vaccinations wherever possible because the likelihood is that for someone with my genetic and medical history (a vitiligo sufferer who is also prone to allergies) vaccinations are likely to cause more problems than they cure.
Suggested reading & links
Or else they imitate nature
I am a big believer in the healing power of #nature and will return to that subject in a moment. But first, I want to begin, in apparently contradictory fashion, by praising modern technology.
If you are a regular visitor to my blog or maybe a regular email correspondent, I thank you for your company and I bless the technology that enables us to communicate like this. For decades I lived alone with my #vitiligo, even though I had a loving family as a child - and I have a wonderful and devoted husband who has always loved and supported me throughout our 30+ years together. Yet, no matter how kind and caring our nearest and dearest are, only others who have vitiligo themselves are really in a position to understand completely what it is like.
Bless the internet!
The internet arrived just a little too late for me to benefit first hand – at least, while I still had widespread vitiligo myself - from the amazing sense of community that now exists among sufferers around the world. But it came along at just the right time for me to be able to spread the word about my own recovery and to embark on an fascinating and empowering journey of discovery, research and mutual support - and hopefully help to ensure others don't feel as isolated by the condition as I did for so many years.
Being able to talk to others who understand what you are going through is possibly the best therapy of all – and one of the most natural in the world. But it is only possible to do this as freely as we now do thanks to technology.
Nature knows best
Thinking about this fact on my daily walk today, it occurred to me – as I wandered past some flies feeding on the over-ripe blackberries in the hedgerows - how the very best technologies always mimic nature and how this just reinforces the truth that nature really does know best. Examples of this are all around us. If that were not the case why is it that helicopters look so much like giant flies, or submarines like whales or sharks?
Similarly, I believe that the best therapies for improving human health are based on nature and that when a truly effective, definitive cure is eventually developed for vitiligo, it will need to be one that works with nature, addressing the root causes of the problem and allowing the body to heal itself, rather than the kind of drug that merely masks the end symptom and causes all sort of side effects in the process. In other words, it will need to be a cure that eradicates the causes of de-pigmentation, not just the symptom.
A holistic approach
I am thankful every day that I was fortunate enough to find a natural treatment for vitiligo that has worked so well for me. The nutritional supplements I used 6 years ago to restore almost all of my lost pigment (and hang on to it ever since) are still the only solution that I can say, with all my heart, have completely changed my life for the better by helping me to feel like me again.
However, I know that my protocol is not a miracle cure. It has been a very effective way of reversing my vitiligo and keeping it 98% at bay. But I still have to be careful about avoiding triggers and I know that it has not altered my predisposition to de-pigmentation, which is almost certainly a genetic one.
The big, universal, game-changing, once-and-for-all cure for vitiligo has not yet been invented. So, in the meantime, I shall continue to use the nutritional protocol that has given me my life back and I shall continue to scour the internet for more clinical, anecdotal, therapeutic and research information. And I shall continue to try and test all the safe and credible remedies I can find and share the information on this blog site and at VitiligoStore.com.
Anyway, back to the topic of nature and how good technologies mimic nature… If you saw the final paragraphs of my last post you will know that I recently began wearing therapeutic jewellery on the holistic basis that anything that improves over-all health and well-being stands a good chance of improving the underlying causes of vitiligo and, consequently, allowing the body to heal itself. After all, this is, I believe, how the supplements work too. They don't magically rid the skin of white patches. They just strengthen the body's own natural ability to achieve a healthy balance and function.
Mimicking The earth's healing energies
It is now about 3 weeks since I started wearing the therapeutic bracelet every day (and most nights too) and the matching necklace on occasions, depending on what else I am wearing. I can report a noticeable increase in energy and concentration, as well as a decrease in the chronic joint pain that I usually experience because of arthritis. I have also noted a decrease in the sinus symptoms I usually experience at this time of the year, due to what I think is a mould allergy. Again, I find it interesting that the technologies used in these products all imitate nature… magnets mimic the earth's natural magnetic field, far infrared mimics the healing warmth of the sun and negative ions evidently create the same quality of fresh and invigorating air that you find in the mountains, at the seaside or near waterfalls.
In order to be sure that these technologies were backed by proper science I did quite a bit of reading up on them and, in doing so, I stumbled on a couple of other potentially interesting products that also utilise the same technologies. I have not added the other products to Vitiligo Store (only thejewellery) but I am trying them myself to see how effective they are. One is an indoor ioniser, which you simply place in any room that might need an improvement in air quality, plug it in and switch it on. It then produces negative ions, just like in the jewellery does, but it can treat an entire room, effectively removing allergens and pollutants from the air. I have been using it in the bedroom which can get musty and even mildewy during the Autumn and Winter months when the windows are closed and the difference has been quite dramatic. Based on results so far, I would definitely recommend one of these devices, especially if you have pets in your home.
The other, very simple, product I am trying is a “magnetic muddler”. This is a metal drink stirrer with a magnet at its tip which magnetises water and other liquids (you can also find magnetising mats that do the same when you place a cup or jug of liquid on top). Apparently, these have been used for ages in both Russia and Japan, where magnetic therapy is routinely prescribed by doctors to help treat a wide variety of chronic complaints, particularly digestive ones. This interested me because I believe the main cause of my vitiligo to be poor digestive function leading to nutritional deficiencies, something that seems to be common to a very high proportion of vitiligo sufferers. One of the effects of magnetising drinks is to make them “wetter” by breaking down the surface tension and this improves nutritional absorption. Again, it seems to be an example of technology imitating nature. It restores the water you drink to the same quality of “living water” that our ancestors would have drunk when they had spring water from their own well instead of chemically treated water supplies that are stored and then routed through endless metal or plastic pipes to our taps. I can't really say yet whether or not magnetising my drinks is helping my health but it certainly isn't harming it and for what I paid on Ebay for this (and for the indoor ioniser) it strikes me as another good value and potentially beneficial tool in my holistic “health kit”.
So, on that note, I will end this post by wishing you nature's healing power and reminding you that your skin, indeed your whole body, is designed to function well and will find a way to do just that, given half a chance and a helping hand from Mother Nature :)
More crucial than I realised
In last week's blog I was full of the joys of spring and looking forward to sunnier weather ahead (I live in hope). This week continued thoughts of sunshine have led me back to a subject I explored exactly a year ago: #vitamin-D, the “sunshine vitamin”, so called because exposure of bare skin to UVB rays is one of only two principal ways of topping up this essential vitamin (the other way being #supplementation).
In the first of two blog posts on the subject last April I described how my doctor had recommended I sit in the sunshine for 20 minutes a day to top up my depleted vitamin D levels. This was one of the pleasantest prescriptions I have ever had, although an all-expenses-paid trip to Mauritius would have been even better. This was the first and only time any conventional medical practitioner has ever even mentioned vitamins to me and I have always had the distinct impression that nutrition hardly features at all in modern medical training. However, vitamin D deficiency has been implicated in an ever-growing list of diseases that are putting an increasing strain on the health system, which may explain why it seems to be one nutrient that is taken seriously by doctors. And this is not surprising when you consider the unique status of vitamin D: it is not just a vitamin, but also a neuro-regulatory, steroidal hormone that influences nearly 3,000 of the 25,000 different genes in the body.
Alarmingly, most of the population is thought to be deficient in vitamin D because they do not have enough sun exposure, whether due to lifestyle or climate (or even over-use of sun protection products), and should be taking vitamin D supplements since it is not possible to get enough from diet alone. #Vitiligo sufferers generally have an even greater deficiency of vitamin D than the general population and low levels are also observed in patients with other inflammatory and autoimmune conditions. So my conclusion was that supplementation is even more important for those of us with a predisposition to vitiligo and autoimmunity.
What I didn't fully understand a year ago, when I was researching this topic, was that the significance of vitamin D to vitiligo goes beyond the fact that deficiency has been linked to this and to other autoimmune conditions. It goes beyond the fact that it acts as a powerful antioxidant combating the oxidative stress that is known to play a part in the depigmentation process. In fact, vitamin D has such a pivotal role in the tanning process that if it is not present in the skin it becomes impossible for calcium to perform its function of regulating the skin's pigmentation cells.
This scientific paper Vitamin D and the skin: Focus on a complex relationship: A review contains a section about vitiligo (you will need to scroll about a third of the way down the page) which states:
Vitamin D protects the epidermal melanin unit and restores melanocyte integrity via several mechanisms including controlling the activation, proliferation, migration of melanocytes and pigmentation pathways by modulating T cell activation, which is apparently correlated with melanocyte disappearance in vitiligo.
The authors go on to describe the various ways in which vitamin D is believed to provide protection against vitiligo, although these are not yet fully understood and their implications for a vitiligo cure are still not yet completely clear.
The science behind this topic is obviously very complex and still being researched. But what is clear to me at this point is that vitamin D supplementation has to be highly recommended for anyone with vitiligo and that, whilst supplementation may or may not restore lost pigment on its own, allowing a vitamin D deficiency to continue seems like a sure way to make your vitiligo – and your general health – much worse.
The supplements I used to repigment my vitiligo contain vitamin D as part of a broader formulation but not in the amounts necessary to correct a specific vitamin D deficiency, so I have added some vitamin D supplements to Vitiligo Store which I can personally recommend. One is in tablet form and is works out incredibly inexpensive to use since one bottle has enough tablets to last a year. The other comes in both adult and children's formulations and is a spray. Although this second option costs a little more per dose than the tablets, it offers a perfect solution for anyone with digestive problems. Because the vitamin D is sprayed under the tongue and absorbed straight into the blood stream it by-passes the digestive system so none is lost through malabsorption and there is no risk of side effects (constipation being one that some people report when taking vitamin D orally). It also provides an option for children.
More to tanning than meets the eye
Twenty first century medical science is so advanced and sophisticated – or so we tend to believe – that it comes as a surprise that many of the familiar processes that occur in the human body are still largely a mystery. One process close to my heart, and to the hearts of millions of people around the world living with #vitiligo, is how human skin tans. Almost everyone has a general grasp of how this works: when exposed to sunlight healthy skin creates #melanin – a pigment that darkens the skin in order to protect it from UV damage. Simple, right? Well, maybe not quite so simple after all.
As recently as 2009 scientists began to suspect that the conventional understanding of the tanning mechanism had some significant gaps. A study into Rhodopsin (a light-sensitive protein found in the retina of the eye and responsible for the visual perception of contrast) suggested that a series of such proteins may also be present in skin.
This surprising theory was borne out in 2011 by researchers at Brown University in Providence, Rhode Island, USA. (It seems fitting that research into the tanning process should be carried out at a university called Brown and that Rhodopsin should be studied in Rhode Island… but I digress!) The study found that melanocyte skin cells do indeed detect ultraviolet light using a photosensitive receptor previously thought to exist only in the eye. Not only does skin possess this eye-like ability to sense light, but it triggers calcium ion signals that instigate melanin production and this melanin production occurs much faster than previously thought: in fact, the calcium signalling starts within seconds of the UV exposure and melanin begins to accumulate within an hour, peaking about 24 hours later.
When I came across these findings online, I immediately wondered if the discovery had prompted any research into how this new knowledge might be used to find a cure for vitiligo. Sadly, I could not find evidence of any such research (although that is not to say that it isn't ongoing and yet to be published). I also wondered what connection, if any, there might be to the fact that many people with vitiligo have some abnormalities in their retinas (the inner layer of the eye that contains the light-sensitive Rhodopsin cells).
There have been a number of research papers published relating to retinal degeneration in mice with vitiligo. Evidently the Rhodopsin levels in vitiligo mice are lower than in normal mice and the part of the retina in the eye that contains the light receptors is unevenly pigmented. But my very limited grasp of the science involved leaves me unsure of the potential relevance of this to human vitiligo research. So, if anyone reading this post has a better understanding or any insight into the topic, please do get in touch and let me know (email@example.com). I promise to revisit the subject if I find out anything else of interest.
In the meantime, I will content myself with the thought that human skin is even more weird and wonderful than I had previously thought and that, given the sheer number and complexity of processes involved in maintaining its health, it is a wonder that anyone on earth has “normal” skin. In fact, I suspect that we all occupy a position somewhere on the "abnormal" scale to one degree or another and vitiligo is just one example of this reality.
A review of Hairprint
The idea of a hair colourant that contains no potentially harmful chemicals whatsoever is a pretty attractive proposition for all of us. And the claim that it restores grey hair to its natural colour in 90 minutes by “mirroring the natural process of hair pigmentation” sounds even more intriguing from a vitiligo perspective. This even set me wondering if something similar could be developed that would mimic the natural pigmentation process of the skin. But maybe someone is already working on that. Anyway, I read everything I could find online about Hairprint and also contacted the manufacturers direct to ask a few questions. What I found out was mostly good and I have summarised it below under the headings of PLUS, MINUS and STILL TO BE DETERMINED.
On the plus side, the Hairprint website categorically states that the product is “safe and toxic-free” and that no strand test is necessary before use, unlike any other colourant I have ever come across. This demonstrates a very high degree of confidence on the part of its American creators, who must be as aware as the rest of us of the litigation culture in the beauty industry and in that country in particular. The reason for their confidence is that the formulation consists of just 8 ingredients that are all very innocuous and because the product is a hair treatment rather than a dye, it contains none of the chemicals that have been associated with cancer or any other adverse effects.
The cost, at $39 US, is more than twice the price of Surya Brasil Henna Cream (my current hair colour product of choice), but still seems to me to be a reasonable amount to pay, especially if it does what it says on the tin.
On the minus side, Hairprint only works for brown and black hair types (any shade from very light brown to black). Apparently the reason it does not work on blonde, red, chestnut or auburn hair is because those hair types contain an additional pigment called pheomelanin, whereas Hairprint only replaces eumelanin, the pigment in black and brown hair. However, the manufacturers say they are continuing to develop other formulations that will work on other shades. So, perhaps it is just a matter of time before these become available.
A further drawback (at least for anyone wanting to change their natural colour) Hairprint will not alter your original shade: it only returns the greys to their natural tone. But I suspect that most of us with hair affected by vitiligo are more concerned about getting that to blend in rather than having a complete change of image. So, if you are wondering what the catch is with this miracle product, it is not a permanent “cure” for grey hair. It has to be reapplied regularly because the roots need to be treated as they grow through. But then this is no different from a dye, with the one massive exception that it is not toxic.
STILL TO BE DETERMINED
So far, so good. My impression is that, whilst this product is not a miracle, it offers far more pluses than minuses. However, there were two questions the makers of Hairprint answered for me that I was unable to categorise as either plus or minus, which is why I am including them in this final category.
Firstly, I asked about the one and only ingredient out of the eight that concerned me (the others being water, baking soda, mucuna pruriens, sodium carbonate, carbomer (a thickener), diatomaceous earth, manganese gluconate, and ferrous gluconate). The ingredient that caught my eye was hydrogen peroxide. Whilst the small quantities of hydrogen peroxide that are in this product would not be harmful in any way to most people, I was concerned about the risk of further increasing free radical activity in the skin in cases of vitiligo, where this is known to be part of the de-pigmentation mechanism. The website states: "The concentrations of hydrogen peroxide we use are, 1%, 1.5% and 3%. In conventional hair dyes, peroxide is used to break open the hair, and can be up to a 12-15% concentration. We do not use peroxide to open the cuticle of the hair (which is very damaging) but rather to oxidise the mucuna pruriens extract. When applied to your hair, the peroxide is virtually gone." This explanation went some way to reassuring me but I also asked the company for more information and they replied that their laboratory tests show that the peroxide disappears in less than 180 seconds, and emphasised that it is only present in small quantities to begin with. They could not offer any further advice for people with vitiligo since no specific tests have been done in this context. For the same reason, they were also not able to comment on how well Hairprint works on vitiligo de-pigmented hair as opposed to normal grey hair. I pointed out that vitiligo greys can be particularly resistant to colouring and treatments. They were aware of this fact but no comparisons had been made on this. However, I was told that they do have customers with vitiligo who use the product, which would suggest that they are happy with it.
I have not added Hairprint to the product range at VitiligoStore.com as I have not yet tried it for myself. I must confess that this makes my comments less of a review and more of an opinion based on what I have researched. I am so in love with the grey coverage and enhanced colour that Surya Brasil Henna Cream is giving me that I am in a bit of a quandary as to whether or not to swap products at this stage but I will certainly white another piece on Hairprint if and when I do to share my experiences. Luckily for me, I am a brunette so I do, at least, have the choice of using Hairprint if I want to. And, with the exception of the small amount of hydrogen peroxide (which, incidentally, does not feature in the Surya Brasil product) the purity and simplicity of its ingredients, and the fact that it is not a dye ,do make it a tempting option. One thing is for sure, both products are as pure and gentle as the proverbial driven snow when compared to most other hair colourants on the market. But, when it comes right down to it, the only way to avoid any possibility of coming into contact with a substance that aggravates vitiligo is not to use any proprietary products at all (including shampoos, conditioners, hair sprays, etc.) which isn't very practical. So my stance on this is to continue researching available products and choosing those with the safest ingredients that pose the least potential risk.
It's enough to make you go grey!
A few days ago a reader posted a really interesting comment on a hair dye article I published a while back. She shared how her #vitiligo started around the same time as she had begun regularly using permanent #hair- dyes containing the usual harsh ingredients (PPD, ammonia, Hydrogen peroxide, etc.) Her experience supports the known evidence that these substances can cause skin de-pigmentation.
Even more worrying than her vitiligo (as if that wasn't bad enough) was the fact that she was also diagnosed with bladder cancer, which is the particular cancer that has most often been linked to the regular use of permanent hair dyes.
The most damning study on the dangers of these ingredients, conducted in California and published in 2001, found that women who used permanent hair dye at least once a month were twice as likely to develop bladder cancer, as women who did not use permanent hair dye. The research also concluded that those who reported regular use of the hair dye for at least 15 years were more than three times as likely to develop bladder cancer as non-dye users, with hairdressers sharing high levels of risk due to occupational exposure.
Since publication of these results, scientific opinion has differed considerably as to their validity. For example. in the Journal of the American Medical Association (JAMA) May 2005, some research was published that looked into all the studies on hair dyes causing cancer. This found that there was unlikely to be any link between dyeing your hair and bladder cancer.
Cancer Research UK points out that a lot of hair dyes made before 1980 contained chemicals that were known to cause cancer in mice but that, since 1980, hair dyes have changed dramatically and many no longer contain these cancer causing chemicals (I'm not sure I am comfortable with the word “many” there! - especially as the article goes on to say that recent studies in China and the USA have pointed to an increased risk for women with certain gene types of developing lymphoma if they use hair dyes).
The website of the Cancer Council of Western Australia provides a potted history of the argument, referring to studies carried out in 2002, 2008 and 2011, and concludes with the following opinion:
“These studies should give reassurance that the link between using modern hair dyes and cancer is, at most, very minimal. Further research is needed to investigate whether certain subgroups may be at increased risk, such as those with a genetic predisposition. People who colour their hair are unlikely to have an increased risk of cancer, even if they have been colouring their hair regularly for many years. If you are still concerned, ensure that you colour your hair in a well ventilated room or salon, so as to minimise exposure to the fumes from hair dyes. Otherwise, embrace your natural colour.“
Whilst I find some of these counter-arguments a tiny-weeny bit more reassuring than I had expected (given the drastic reactions these controversial ingredients can cause), I remain very firmly in the Why On Earth Risk It? camp.
The advice offered in the paragraph quoted above to use permanent hair dyes "in a well ventilated room" strikes me as faintly ridiculous, since most hair salons I have ever visited are far from well ventilated and, more to the point, what we are talking about is actually painting these chemicals onto our skin and leaving them there for a considerable time, not just breathing them in.
But it is the point raised about increased risk for those with a genetic predisposition that is really the clincher for me. If the consensus of opinion is – to paraphrase the Cancer Council of Western Australia - that permanent hair dyes are probably a bit toxic and a bit carcinogenic but probably only really potentially lethal for people who have very regular, long-term exposure and/or have a genetic predisposition, then I am certainly not going to be rushing off back to the colourist any time soon!
I am all for reducing my risk of cancer as much as I possibly can, especially as - like most people - I have no idea if I am genetically predisposed to developing it or not. And, as someone who does know she has the vitiligo gene, I feel the same way about avoiding known de-pigmentation triggers, which is why I no longer use permanent dyes, opting instead for pure (no added nasties) henna or the only brand of (semi-permanent) colour I have come across that is free from all of the following: ammonia, peroxide, PPD, DTA, phenoxyethanol, resorcinol, propylene glycol, heavy metals, parabens, mineral oils, GMOs, gluten and artificial fragrances.
Anyway, to come back to the blog comment that started this post, it really got me thinking again about this whole subject of grey hair and how to combat it safely and I have a feeling I will be returning to the topic again soon...
Could new cancer research hold the key to a cure?
One of this week's most exciting media stories was the spectacular success scientists are experiencing with engineering immune T-cells to target a particular type of blood #cancer. To administer #T-cell-therapy, doctors remove #immune cells from the patient, tag them with “receptor” molecules that target a specific cancer and then infuse the cells back into the body. In effect, they are successfully programming a patient's own immune system to attack cancers in the same way as other T-cells target flu or other infections.
This breakthrough research is obviously very encouraging for everyone, given that cancer is still a leading cause of death worldwide, with one in two people born after 1960 (in the UK) being diagnosed with some form of cancer during their lifetime.
But for those of us with vitiligo or other autoimmune conditions, the research may have additional benefits, since the greater the advances in T-cell therapy the more likely it becomes that it could be used to reprogramme our immune system to prevent it from attacking healthy cells – i.e. melanocytes, in the case of autoimmune vitiligo.
An interesting paper - Targeting Antigen-Specific T Cells for Gene Therapy of Autoimmune Disease - describes previous research aimed at achieving exactly this aim. Not only have scientists been working on reprogramming T-cells to correct autoimmunity but they are also trying to use them to deliver therapeutic and regenerative products to sites of inflammation and tissue destruction. So it seems that there is in fact more than one way in which this particular kind of gene therapy could use the body's own immune system to counteract, or even cure, diseases like multiple sclerosis, diabetes mellitus, rheumatoid arthritis and vitiligo.
When I read about this latest cancer research, one particular comment made by Lead researcher Professor Chiara Bonini jumped out at me. He said:
“T-cells are a living drug, and in particular they have the potential to persist in our body for our whole lives.”
If this potential becomes reality, not only could it make the scourge of cancer a thing of the past but it could also provide a permanent solution to autoimmunity, making the onerous, unpleasant and often ineffective treatments and lifestyle changes currently used to combat such conditions unnecessary.
From a personal perspective, I am very grateful that I have been able to reverse my pigment loss and keep my vitiligo at bay on an ongoing basis. I know that many vitiligo sufferers are not as fortunate. But my continued success does depend on ongoing nutritional supplementation and careful avoidance of known vitiligo triggers. How wonderful it would be to live life as if vitiligo (and so many other diseases) simply did not exist … because they had finally been beaten. We are not there yet, but the news this week does appear to have brought us a significant step closer!
A vitiligo blogger since 2011. My name is Caroline. I had vitiligo for nearly 50 years before finding an effective treatment. I created this blog to share my experiences with others affected by this skin condition.