For decades I witnessed the relentless spread of #vitiligo over my face and body with a mixture of dread and fascination (until it had removed roughly 80% of my natural skin colour). If I’m honest, I felt more dread than fascination. But, in my more objective moments, I do remember being curious as to how on earth my body “decided” where each new white patch would appear, what shape and size it would be and how – most of the time - it replicated the same pattern on both sides of me so as to produce a kind of mirror image. This effect even created a bizarre impression in my mind of vitiligo as being, not so much a disease process, as a design process. It was as if I was gradually being taken over by a self-generating form of body art! I was intrigued as to how my skin “knew” what to do next and how it managed to maintain each new design that it created on my body. Realising that skin cells are in a constant state of reproduction and replacement, I wondered how it could be that the same type of cells that had spent years recreating my normal flesh colour could then switch, in certain areas, to reproducing a pure white version of themselves and accomplish this with almost perfect symmetry.
Later, when a combination of nutritional supplementation and sun exposure resulted in my relatively rapid and comprehensive #re-pigmentation, the dread I had felt earlier at the disappearance of my pigment was replaced with surprise, elation and utter relief (to the point of waxing poetical!). And my sense of fascination was, if anything, even greater than before. I was now left wondering at the fact that the same areas of skin that had been producing and reproducing pure white cells had now reverted to creating coloured ones again. Many of these areas had not done so for 20, 30, 40 years or more. And yet all these decades later they had begun to behave as they used to for no apparent reason, except that I was feeding my body high levels of certain nutrients. It was as if they had been suffering from a seemingly permanent state of amnesia only to finally, and miraculously, recover their #memory... or was this process actually the other way round? Was it the vitiligo patches that were doing the remembering?
Research teams at four separate laboratories (including a team led by Dr John Harris) have concluded that skin actually creates a “memory” of the locations of new vitiligo patches when they are first formed, meaning that it “knows” where to recreate them in the event that a re-pigmentation treatment produces only temporary results. This kind of short-lived success is quite common in cases where purely topical therapies are used and subsequently discontinued. If re-pigmentation is achieved without the internal mechanisms that lead to vitiligo also being addressed de-pigmentation tends to recur in exactly the same places and shapes as before once those treatments are stopped.
I experienced this to some extent myself (before my eventual recovery) on the odd occasion when a vitiligo patch would regain some pigment during the summer, almost disappearing, but then re-surface in exactly the same configuration some time later. Since then, I have been very fortunate in that I have not experienced any such relapses in my re-pigmentation. But I attribute this permanent recovery to the fact I used an internal, nutritional, approach which I have continued to follow ever since. And whenever I have used a topical therapy - such as UV exposure and, if and when needed, the antioxidant-rich gel Vitix - it has been in addition to nutritional supplementation, not instead of it.
Relevance for a vitiligo cure
The research teams investigating these “memory cells” within the skin have discovered that they are the reason our immune system attacks our pigment-producing cells in the seemingly bizarre way that it does. Their real job is to protect the skin from all future recurrences of harmful viral infections but, in vitiligo, they mistakenly identify the skin’s own pigment-producing cells for such infections and attack them. Although scientists have known for a while that cells possess something akin to memory, far as I can tell, this knowledge in relation to vitiligo is something quite new. Evidence that an inappropriate immune response lies behind autoimmune vitiligo (and a whole range of other conditions too) is not news. But, until now, no one had figured out that once cells have been affected by vitiligo they retain an in-built ability to “remember and file away for future reference” this initial occurrence in order to mount the same immune response in exactly the same locations again and again. Unless, of course, medicine finds some way to prevent them from doing so. Which is, as I understand it, the aim of this research. If researchers can find a way to make these cells “forget” to fight our pigment cells, then this would be one way to #cure- vitiligo.
This possibility is one of many currently being explored and is a reminder that we are living in very hopeful times. Those of us who have been fortunate enough to find natural ways to reverse and manage our vitiligo long-term may not feel the same urgency as many others do to get access to vitiligo drugs. And we may, with good reason, be wary of potential unknown side effects of new medications. But I have no doubt that effective pharmaceutical treatments are on their way and that, alongside existing medical and complementary therapies, these will improve the options available to everyone with vitiligo very significantly indeed.
Research highlights from WVD 2018 Conference
As I only managed to join the live stream of the #WorldVitiligoDay 2018 Conference (Children, Research, and Hope for the Future), organised by Dr John Harris at the University of Massachusetts last month, for an hour or so, I have been viewing the video off and on over the past couple of weeks and thought I would share a little of what I have picked up with you in case this is something you haven’t had a chance to do yourself.
First of all, I must say how very impressed I was – but not in the least surprised – by the feel of the whole event. Even watching and listening online, I could sense a warmth, passion and mutual support and respect among the audience and the speakers that reinforced my opinion that vitiligo – love it or loathe it – has the ability to bring out the best in us by giving us a clearer understanding of ourselves and greater respect and compassion for others. Above all, the atmosphere was relaxed, good-natured and justifiably optimistic.
The first live stream of this conference: a great opportunity to feel part of it
Thanks to the efforts of the organisers and the wonders of modern technology, many of us from all over the world have been able to share in this annual event for the first time. And, whilst we were not able to participate in the mealtime conversations or the evening karaoke (shame!), we still have the opportunity to gain a huge amount of information and inspiration by playing the video which features an impressive and diverse array of guest speakers. They all made valuable contributions to the event, of course, but in this blog I particularly want to mention some insights I gained from listening to the 12 speakers who provided an update on current #vitiligo-research as I know this is a topic very close to so many hearts.
I found all of the scientific input engrossing and encouraging, even if I can’t pretend to have understood it all (despite the fact that the speakers all did a good job of translating their topics into layman’s language as far as possible). But there were certain presentations that particularly excited me more than the others. Not that they were better, but simply because they resonated with my own experiences.
I shall give you some snippets on all 12 of the presentations, in the order they were given, and let you guess which ones specifically caught my attention. (Don’t worry – I’ll tell you at the end anyway!)
12 Vitiligo research presentations
Dr Harris started things off by providing an update on the research he and his team have been conducting using mice and also blood and skin from human patient volunteers. He included details on the two clinical vitiligo trials that are currently ongoing, which mainly revolve around the use of JAK inhibitors, but also talked about a non-JAK inhibitor drug that it is hoped could give long-lasting results (i.e. a short course could create years worth of benefit) which is due to be tested in a clinical trial in the summer of 2019).
Dr Bassel Mahmoud talked about his area of expertise, which is surgical treatments for vitiligo. These are used typically in cases that don’t respond to any other medical treatment. The skin grafting technique he described does not give instant results. It can require a month or two for new pigment to start showing and can take up to a year for it to develop and spread. But it has a 60 – 90% success rate.
Dr Prashiela Manga‘s area of research is into exactly what it is that makes melanocytes the target of the immune system in vitiligo. She described experiments that have been conducted to investigate how melanocytes become stressed. The experiments use various chemicals that are known to trigger vitiligo (e.g. certain phenols) to model the stress response pathways in vitiligo and non vitiligo samples. Samples from vitiligo doners were found to be much more sensitive to these chemicals than non-vitiligo doners. This stress leads to the autoimmune response, resulting in melanocyte cell death. The goal of this research is to find way of modifying the autoimmune component of this process in order to protect the melanocytes.
Dr Stanka Birlea’s specific interest is in the re-pigmentation process. She gave a description of the stem cell research she is doing into the hair follicle bulge and differentiated melanocytes in the epidermis by studying skin biopsies from narrowband UVB patients to see how the re-pigmentation process occurs. This research has been going on for 6 years and is still ongoing. The long term goal is to select molecules that can be incorporated into pharmaceutical compounds to induce re-pigmentation.
Dr Amit Pandya gave an overview of the range of treatments available at the Vitiligo Clinic at the University of Texas Southwestern. He advocates aggressive treatment of the "confetti-like lesions" that are typical of rapidly progressing vitiligo as soon as these symptoms appear. (It was refreshing to hear Dr Pandya stress the importance of early vitiligo treatment, given that so many patients are met with a decided lack of urgency and positivity from their doctors when they are first diagnosed.) He pointed out that the Quality of Life (short form-36) survey shows that vitiligo results in more depression and mental stress than most other serious health problems, including cancer, heart disease and diabetes. And it was clear that he feels passionately about the need to get the word out that vitiligo is treatable and that early treatment is crucial. With that in mind, he made reference to two documents that have been published by The Vitiligo Working Group (of which he and several others of the guest speakers are part) that can be used with dermatologists. One is guidelines for vitiligo phototherapy (Dr Pandya stated that there are 17 thousand dermatologists in America and the majority of them don’t know how to treat vitiligo with phototherapy.) and the other is “Current and Emerging Treatments for Vitiligo”.
Dr Iltefat Hamzavi, a prolific expert on vitiligo and also a member of the Vitiligo Working Group, continued on this theme by encouraging delegates to refer doctors who do not know how to treat vitiligo to these guidelines. He then described his current involvement in developing treatments around the individual needs of each patient by combining topical and oral treatments with phototherapy to get the best results and his interest in customising and optimising light frequencies for better phototherapy results.
Dr Caroline Le Poole talked about her current research into the bacteria of the gut and what relevance this might have in vitiligo. She described experiments that looked at the microbes on the skin and in the gut of vitiligo mice. These found no great difference as a result of changes in skin bacteria but discovered that altering the gut microbes by administering antibiotics definitely accelerated the progression of vitiligo in the mice. This has led to the start (this summer – due to start in August and complete in June 2020) of a clinical trial entitled “The gut and skin biome in vitiligo disease progression”. This will take the form of a pilot study aimed at answering the question whether the gut and skin microbiome of patients with vitiligo differs from the general population. Dr Le Poole and her team have also been working on another treatment for vitiligo - a possible immunomodulatory agent that has been shown to be effective in larger animals based on a modified version of the stress protein (HSP70).
Dr David Rosmarin, described the different “arms” of the immune system that are too active in various different skin diseases and talked about the particular JAK inhibitor (Ruxonitlib) that currently looks the most promising for targeting the arm of the immune system that is overactive in vitiligo. He explained that oral JAK inhibitors can cause systemic side effects whereas topical ones offer a way of reducing side effects, which is why topical Ruxonitlib is the subject of a large study, being funded by its makers Incyte, aimed at getting it approved for clinical use.
Dr. Victor Huang announced the opening of a new Vitiligo Medical Centre at UC Davis. One of its aims is to create a high fidelity registry of patients and a really comprehensive bio-repository from vitiligo patients, representing all aspects of vitiligo. He also talked about his collaboration with MIT to produce a cost-effective, available and reliable method of accurately measuring changes in vitiligo during treatment. He stressed the importance of this because it can be difficult for patients and clinicians to judge whether or not vitiligo treatments are working, given how gradually changes typically occur and how unreliable our perception of these changes can be.
Dr Nada Elbuluk talked about 2 categories of research she was involved in during her time at NYU:
1. studies (in collaboration with Dr Manga) into the stress pathways involved in vitiligo and
2. psychotherapies for vitiligo, looking at how support groups, psychological therapies and psycho-social interventions can help patients. This is just as important, in her opinion, as medical treatment. Not surprisingly, survey results are beginning to show greater quality of life for those in support groups than those who are not. She had also been involved in studies into the association between vitiligo and certain other conditions. Some of these have been known of for some time, like thyroid disease, inflammatory bowel disease, etc. and others, like MS are more surprising. This data is important since clinicians need to know what else to screen for when patients are diagnosed with vitiligo.
Dr. Brett King described how he was inspired by Dr Harris’ mouse model of vitiligo to consider the possibility that the class of medicines known as JAK inhibitors might be applicable to vitiligo as a way of interrupting the pathology of the disease and preventing depigmentation. Promising early indicators have led to further research over the past 3 years and now to the clinical trials currently underway. These represent a first step toward effective drugs for vitiligo. He delighted the conference with his assertion that a time is coming soon when everyone with vitiligo will have the option whether they want to have their vitiligo go away or keep it! “It will be a choice that is firmly yours and nobody else’s” said Dr King.
Dr Michael Montgomery of Incyte – the pharmaceutical company that makes JAK inhibitors, including Topical Ruxonitlib, was the last of the 12 speakers. He explained that the company's sponsorship of the current clinical trials of Ruxonitlib cream for vitiligo, which is aimed at getting approval in the US and Europe, was part of a relatively new departure into dermatology for the company, which has previously been involved mainly in developing drugs for cancer.
The vitiligo projects that interested me the most
I have only been able to give you a sketchy idea (a mostly accurate one, I hope) of the 12 presentations. But I hope that, like me, you have caught a sense of how far vitiligo research has come in the past few years and how exciting it is that, finally, individuals with great expertise, passion and dedication to their cause - and organisations with money to invest - are being seriously proactive about taking on vitiligo.
The impression I have been left with is that there is, at last, a growing and unstoppable body of people – represented at the conference, but also around the world – who are determined to solve the vitiligo mystery, improve existing treatments, raise awareness, educate the uninformed and find effective cures.
All of this excites me. But a couple of topics in particular really caught my attention and I wonder if you have guessed what they were?
The first was a subject referred to by several of the speakers: the importance of “educating” (my word, not theirs) doctors about vitiligo. I talk to so many people around the world whose doctors have dismissed or trivialised their condition and have not offered them appropriate or timely treatments. Some of these patients are assertive enough to ask for second opinions or to challenge negative attitudes, based on their own experiences or serious online research. But doctors do not like to be told how to do their job. Let’s face it, who does? Too many patients end up with little support, few options, poor outcomes and a sense of hopelessness. How refreshing, then, to hear some of the world’s foremost experts on vitiligo talk about the effectiveness of existing treatments and the importance of psychological support. And how useful it is for patients everywhere to be able to refer their doctors, if necessary, to published guidelines produced by those experts specifically to inform the medical profession on best practice in vitiligo.
The second topic that had me on the edge of my seat was Dr Caroline Le Poole’s research into the relationship between vitiligo and the bacteria in the gut. Amid so much talk of drugs, phototherapy and skin grafting, it came as quite a surprise to hear a scientist announce that her goal is to “find out if there is a link between vitiligo and the contents of our gut and how well we digest our food”. Anyone who has read the story of my re-pigmentation or many of my blog posts will understand why I welcome the news of this area of research. As someone whose chronic poor digestion and vitiligo developed hand-in-hand over decades, only to reverse dramatically as a result of nutritional therapy, I have been interested in the apparent link between vitiligo and the working of the gut for years and am convinced that healing the digestive system is the key, and the safest route, to reversing vitiligo. I have lost count of the other vitiligo sufferers I have heard from who also suffer from poor digestion, “Leaky Gut”, IBS, food sensitivities and the like. And yet most medical professionals refuse even to discuss these problems in relation to vitiligo. So, hearing that serious research and clinical trials are going on into this was music to my ears. Maybe, at last, the time is approaching when doctors will no longer be able to pooh-pooh (sorry about that) the concept that vitiligo is not just skin deep, but may actually be a symptom of digestive abnormalities.
Free streaming broadcast: Sat June 23rd & Sun June24th
Great news for all of us in the vitiligo community around the world: by the time next Monday (25th June – #World-Vitiligo-Day 2018) arrives, we could find ourselves a lot better informed about current and future developments in #vitiligo-research and clinical care. I say this because we all have the opportunity to stream this year’s WVD conference by visiting this page on the University of Massachusetts Vitiligo Clinic and Research Center’s website.
Entitled Children, Research, and Hope for the Future, the conference will be hosted by the Director of the Centre Dr John Harris (you may have seen my previous blog post about Dr Harris) and Valarie Molyneaux the Founder and Chief Executive Officer of VITFriends and the programme will include presentations from a diverse and impressive list of guest speakers, drawn from the worlds of dermatology, pigmentation research, psychology, modelling, broadcasting, celebrity, business and even photography.
The live stream for the conference will be available at the following times (time zone: EasternDaylight Time / UTC/GMT-4)
If you do listen in, I feel certain that World Vitiligo Day 2018 will not only find you better informed, but uplifted and encouraged too. Although we may not always be aware of the fact, there is so much to celebrate and anticipate in the areas of vitiligo research, awareness and support. And this weekend is probably the best chance to date for us to feel part of this exciting progress.
Will vitiligo cure be a magic bullet?
Last month I wrote about the exciting progress being made towards an eventual cure for vitiligo by Dr John Harris and his team at the Vitiligo Clinic and Research Center at the University of Massachusetts Medical School. In particular, I celebrated Dr Harris’ unequivocal assertion that the damage caused to pigment cells in vitiligo is fully reversible. To me, confirmation of this fact from such an eminent expert was more thrilling than any of the detail about experimental drugs currently being trialled. I found it thrilling because it not only reinforced my own experience of vitiligo reversal but it was a clear indication that it is no longer a question of whether a vitiligo cure will be developed, but rather when.
The fact that clinical trials are actually going on now and that the first generation of drugs is likely to emerge within the next couple of years is obviously good news. These medications promise to be a godsend to the millions of people around the world for whom pigment loss can be psychologically devastating and socially disabling. Getting rid of the white patches that are the only obvious sign of illness in vitiligo has been a shared dream for countless sufferers, therapists and researchers alike. And it now seems highly likely this dream will be realised within the next few years.
I, for one, am delighted at this prospect. It has the potential to change the lives of an estimated 1- 2% of the world’s population for the better. And, whilst my own vitiligo has virtually disappeared, I am always aware that the condition could return if I were to stop the nutritional therapy that has reversed it or else expose myself to certain triggers.
The research so far has identified what appears to be the core pathway for the development of vitiligo, which involves destructive autoimmune activity and an abnormality of the melanocytes (pigment cells). The aim is to pinpoint (or at least narrow down considerably) the process by which the immune system attacks melanocytes, as opposed to other parts of the body, and turn that particular “switch” off without deactivating the whole immune system. But Dr Harris makes no secret of the fact that these initial medications will not offer a perfect cure.
If I understand what I have read on this subject correctly, it is not yet possible to produce a drug that targets the autoimmune threat to pigment cells with pinpoint precision. So the best that can be expected of the first wave of medications is that they will halt and reverse vitiligo but may also increase susceptibility to certain other conditions such as shingles.
What do we mean by "a real cure"?
This begs the question: what do we really mean when we talk about a vitiligo cure? So-called magic bullets rarely, if ever, perform perfect medical miracles. Drugs usually come with various limitations, side effects or other unintended drawbacks, which may or may not later be minimised through continued research and development. And, of course, they always come at a price because medical research is an expensive business and pharmaceutical companies are not generally known for their charitable work. So, optimistic though I am, I am also aware that the first new treatments your doctor is likely to prescribe for your vitiligo will not be perfect and they will not be cheap.
In a sense, you could say that this is no different from the current state of affairs. We already have access to numerous imperfect vitiligo treatments and none of them (except for sun exposure) is free. So, as long as the new drugs prove to be better at re-pigmenting vitiligo lesions than current options, then at least modern medicine will have succeeded in alleviating a lot of psychological suffering by providing a cosmetic solution to the problem. And that is good. But I very much hope that vitiligo research will not stop there. Because I do not believe that eradicating skin de-pigmentation is necessarily the same thing as curing a patient. And, as patients, I think we need to be aware of that concept so that we don’t find ourselves relinquishing all responsibility for our wider health just because our skin reverts to its normal colour. I believe we will still need to ask two important questions: what caused the pigment loss in the first place; and has the drug fixed that?
Curing white patches or curing people?
Five years ago in this blog, I posed the question: is vitiligo a disease or a symptom? If it is a disease, then any treatment that succeeds in permanently eradicating de-pigmentation will, deservedly, be hailed as a cure. But if it is (as I believe) a symptom, then it will only have succeeded in providing a cosmetic solution. It will not have addressed the reason for the symptom. And, whilst that would still be a life-changing achievement for millions, it is worth being aware that this could present additional risks, aside from the kinds of side-effects that might be considered acceptable (like the odd case of shingles).
Not being a scientist myself, I can only use my common sense and limited knowledge to speculate as to what these risks might be but an increased susceptibility to various pathogens (and maybe not just minor ones) is evidently one. For another, I imagine that blocking autoimmune attacks against melanocytes is not the same thing as curing autoimmune disease so it might cause the immune system to redirect its attacks to other healthy cells instead. And, as I indicated earlier, eradicating a symptom like pigment loss may be a bit like removing the safety warning signs from a faulty piece of equipment. It may give us a false sense of security about the state of our health.
Am I pouring cold water on the prospect of a "vitiligo cure"? No -absolutely not. It is what I have spent the major portion of my life hoping and praying for. And I am still eagerly looking forward to the day when doctors will be able to offer vitiligo patients a reliable way of reversing their pigment loss. But I am just sounding a warning note that using drugs designed purely to return the skin to its normal colour will not necessarily be the same thing as restoring the individual to health.
Experts agree that vitiligo is a multifactorial condition. In other words, a complex combination of factors are involved in its development and these are not even necessarily the same in every case. For myself, and many others I have come into contact with over the past 8 years, an underlying cause of our vitiligo is evidently poor nutritional absorption, due to digestive abnormalities. And these will still need to be addressed if we want to be free of all autoimmune diseases and enjoy full health.
So, whilst I am very excited to think that we are about to enter a pioneering stage in medical vitiligo treatment, one that promises to provide the best cosmetic solution to date, I anticipate that the underlying health problems that cause de-pigmentation in the first place will still need to be addressed before these medications can truly be called a perfect cure.
Damage to pigment cells is not permanent
Vitiligo is something none of us asks for and most of us would rather live without. Of course, there are exceptions to every rule. I was surprised the other day to read about Bashir Aziz, from London who has so successfully come to terms with his vitiligo that he is actually disappointed to discover that he is spontaneously re-pigmenting! His attitude is a startling demonstration that, whilst we do not have any choice as to whether or not we develop a condition like vitiligo, we do have a choice as to how we respond to it.
Nevertheless, the struggle to overcome the emotional response to losing our skin colour can prove too much for many of us, in spite of our best efforts. Personally, I never came to terms with my mine (unless feeling resigned to something counts as coming to terms with it). So I was completely thrilled and grateful beyond my wildest dreams when I re-pigmented. And I am utterly delighted whenever I hear of others experiencing the same thing because I know what a life-changing experience it is.
Vitiligo can be especially hard on parents
Knowing how deeply disturbing and depressing the inexplicable and piecemeal loss of one’s natural skin colour can be, my heart goes out to everyone affected by this experience, and especially to parents whose children may develop the disorder. I often receive emails from mothers and fathers who typically express fears that their children will either inherit vitiligo from them or, if their child already has the condition, they worry that it will lead to psychological or social difficulties in the future. Their concerns that their children will be miserable as a result - and their sense of frustration and helplessness at the lack of a cure - is often heartbreaking. However, as I always tell those parents who contact me, I truly believe that there have never been as many reasons to be optimistic about the future of vitiligo sufferers as there are today. This skin condition may have been minimised and largely overlooked by the medical and scientific community for generations but I am glad to say that this state of affairs is finally changing.
Latest vitiligo research video
I recently came across an exciting article by Erika Page on a website called Living Dappled. Erika has vitiligo and is clearly very committed to helping others with the condition by providing encouragement and information, particularly aimed at supporting female sufferers. As part of this project she has embarked on a series of video interviews with #vitiligo-experts in which she asks them to share 5 points of interest. The first of these interviews was with Dr John Harris, Director of the University of Massachusetts Vitiligo Clinic and Research Center. The live video interview gives a fascinating and immensely encouraging insight into the vitiligo research being done there. You can read Erika's summary of Dr Harris' five points - and view the whole video - on this page.
"Vitiligo is fully reversible"
Having watched the interview with Dr Harris, I felt encouraged on a number of levels. For a start, it is unusual to hear a scientist speak about a complex field of research in such clear and simple language. It is obvious that his commitment to finding effective treatments for vitiligo is his passion, not just a job. And I found it refreshing that he is evidently so in tune with the patient’s point of view, which I suppose is due to the fact that he is a clinical dermatologist as well as a research scientist, so he gets to see first hand how vitiligo affects people on a human level.
Just knowing that serious #vitiligo-research is actually going on and has identified the key pathway involved in the development of vitiligo (a combination of autoimmunity and abnormal melanocytes) is encouraging. And realising that research has progressed to a stage where clinical trials using drugs designed to "switch off" the autoimmune pathway that attacks melanocytes - are well underway is reassuring. Add to that the fact that a number of pharmaceutical companies are finally showing an interest in funding vitiligo research and you realise that these are significant strides in the direction of producing a long-awaited cure.
But, for me, the most exciting moment in the whole interview was Dr Harris’ categorical statement that, unlike the cellular damage associated with certain other autoimmune conditions, the damage done to pigment cells in vitiligo is fully reversible. The information itself was not the cause of my excitement (because, after all, my own re-pigmentation after 50 years clearly demonstrates the truth of his statement). What really made me sit up and rewind the video a couple of times was hearing someone with his professional credibility confirm it publicly. For generations, too many doctors the world over have repeated a mantra of doom and gloom: they have told countless thousands of patients that their pigment cells are dead, that white patches never recover, that there are no cures and that treatments aren’t worth trying because they don’t work. Well, now let’s hope these doctors will start to be a little more open-minded and constructive in their response to vitiligo. And, if some of them are slow to bring their attitude into line with current developments, perhaps patients themselves will at least be in a stronger position to educate them on the subject!
How to REMove your white spots
It doesn’t seem long since I was soaking up some late summer sunshine in the garden and feeling incredibly grateful to see a nice, even tan in all the places where my white vitiligo patches used to be (except for a couple of freckled areas on my hands and feet that are, amazingly, still blending in after all these years). A fairly dry and bright autumn has come and gone since then, followed by the onset of an inevitably wet and chilly British winter. Last week a deluge of rain fell here in the far north west of England, creating serious flood waters in a matter of hours. These threatened to seep into our house, but thankfully, stopped just a few feet short before subsiding. Now, as I write this, I am looking out of the window at a soggy but peaceful scene. Only a handful of leaves still cling tenuously to the branches while the rest lie decaying on the ground. All the flowering shrubs and bulbs have died back and are resting, apparently devoid of life but actually drawing in nutrients and storing up their vital forces ready to burst forth in a riot of colour and energy again in the spring.
Mother Nature’s seemingly miraculous annual cycle of renewal makes me wonder at her ability perpetually to regenerate and thrive when left to her own devices. Surely there can be no logical reason to think that animals (including humans), being part of the natural world, should not also share this marvellous ability. After all, we are constantly dying and regenerating at a cellular level. Some people claim that by the end of any given 7 to 10 year time span every one of our cells will have regenerated, meaning that we become a completely new being. (Whilst this may not be strictly true, the concept is broadly correct.) And yet, of course, we are still the same individual with - hopefully - the same memories and personality. I find it amazing that our body knows how to recreate each part in exactly the same way each time, as if it has a set of blueprints to follow. In fact, it does have a genetic set of instructions, which I suppose is why most of us don’t mutate every few years into a completely different animal! And, as if that wasn’t impressive enough, every night we enter a state that resembles hibernation as we lie down, dormant, for 8 hours, apparently barely alive but in reality doing the same thing as the plants outside my window are currently doing: processing nutrients, resting, storing up energy and renewing ourselves.
Whilst sleep is something we all spend around one third of our lives doing (or, in some cases failing to do), most of us understand very little about it. It is a mysterious activity that, by definition, takes place somewhere beneath our consciousness and beyond our comprehension. Like so many physical functions, we are largely unaware and unappreciative of it… until it goes wrong. And when it does go wrong, on a consistent basis, it leaves us feeling wrecked. We may not understand why we feel so awful but sleep experts – who are gaining more and more insight into the purpose of sleep and the consequences of sleep deprivation – would probably agree that the term “wrecked” is an apt one, since it well describes the damage that occurs at a cellular level inside our body and brain when we do not get enough quality sleep. Just as a never-ending summer with no period of hibernation would eventually kill the plants in your garden, lack of deep sleep over the long term will eventually wreck your health from the inside out!
Why is sleep so important?
Everyone knows that getting a good night’s sleep is essential to looking good and feeling good. The term “beauty sleep” is a universally familiar one and generally refers to superior quality, restorative sleep as opposed to short naps or sedative-induced states of unconsciousness. More specifically, it was traditionally used to describe sleep that occurs before midnight, since popular belief had it that “an hour of sleep before midnight is worth 2 hours of sleep after midnight”. Up to a point, this is apparently one of those rather insultingly named “old wives’ tales” (but being a less than young wife myself, I feel I may use the term without fear of criticism). However, the belief does have some basis in fact. According to the Centre of Integrated Research and Understanding of Sleep (CIRUS) in Australia, it is not the actual time of day or night an individual goes to sleep that matters. No matter what time the clock says, sleep is at its deepest and most beneficial during its early stages (specifically during the first two cycles).
Another proverb (an Irish one) says “A good laugh and a long sleep are the best cures in the doctor’s book”. There is no question in my mind that laughter is powerful medicine (but I think that is probably a subject for another blog post). As to the length of sleep required for optimum health, current medical opinion suggests an average of 8 hours a night for an adult in normal health, more for adolescents and anything up to 12 hours for children. And, whilst sleeping long enough – but not too long - is important, experts agree that it is actually the quality of our sleep, not just the quantity, that is crucial. So what exactly is meant by quality sleep?
Studies show that sleep is made up of repeated cycles, each lasting about 90 minutes and consisting of two distinct parts. These are referred to as NREM (non-rapid eye movement ) and REM (rapid eye movement). These parts can be further categorised into light and deep sleep, with most deep sleep occurring during the first one third of the night and becoming lighter – and with longer periods of dreaming - towards the end.
Each phase of sleep presumably serves a particular purpose but it is thought to be during the periods of deep NREM sleep, when the heart rate slows, blood pressure drops and body temperature is at its lowest, that the most beneficial effects are derived. Precisely what is going on in the brain and the body during deep sleep is still not fully understood but it is in this phase, when the body is outwardly at its least active, that the brain and all the body’s cells and networks are, in fact, very active indeed: busy running all of the repair and maintenance routines that presumably cannot be accomplished during waking hours or during light sleep. If we get enough deep sleep we should wake up feeling like a new person.
Becoming a new person: sleep and our genetic code
I mentioned earlier that, mercifully, we do not mutate into different beings every time our cells renew. But, of course, we do change. For one thing, we grow older and, for another, we sometimes develop symptoms that weren’t there before. Sleep studies consistently indicate that people who are regularly deprived of sleep, whether due to lifestyle or sleep disorders, develop more of the symptoms of ageing and of chronic illness than those who enjoy good quality sleep. This is something that we all instinctively know to be true but which is only now being scientifically measured and better understood. Given that sleep is such a crucial part of the regeneration process, it seems likely that it is also essential in ensuring our genetic blueprint is faithfully maintained and recreated. As far as we know, we are all born with a set of genetic instructions that specifies we should each have a particular, uniform skin colour. So it is pretty clear that, in cases of vitiligo, something is going wrong at some point in the process of regenerating those skin cells (a process that takes approximately 4 weeks). Similarly, there are many other chronic conditions, syndromes and mysterious symptoms that people develop and that doctors struggle to diagnose or treat. We give all of these ailments names: we call unexplained pigment loss “vitiligo”; perpetual tiredness is labelled “ME”; and aches and pains all over that never go away is described as “fibromyalgia”. But another way of looking at these symptoms is that they are all the result of a departure from our original blueprint for normal health. Could a lack of restorative sleep be a cause – or at least a factor in the development of these apparently unrelated illnesses? Well, it would make sense. And it would be nice if it were that simple. In reality, I doubt that it could be the only cause of vitiligo, for example (otherwise insomniacs everywhere would be losing their pigment), but there can surely be no doubt that a lack of deep, therapeutic sleep could trigger its onset and would probably aggravate an existing case. So, it follows that improving sleep is highly likely to help slow, or even reverse, vitiligo. And not just vitiligo; I suspect this is true of most conditions that develop gradually and then become chronic.
Having reached this point in my musings, I am starting to realise just how complex and wide-ranging the subject of sleep and vitiligo is likely to be. It will certainly require a lot more detective work if I am to do it any justice and I don’t want to cause you to nod off (or do I?) by turning this post into a marathon. So, at the risk of leaving you with more questions than answers at this stage, I shall pause for now and come back to the topic in Part 2, once I have had some time to… yes – you guessed it – sleep on it.
MANY VITILIGO OPPORTUNITIES
I used to think that there was one single cause of vitiligo and that one day a team of scientists somewhere would discover what it was and produce one single cure. I thought this because I am a great believer in getting to the root of problems rather than simply patching up the symptoms. I assumed that most disorders had just one root cause, if you were able to trace their development back far enough. It remains to be seen if this is true of vitiligo, but my own experience of re-pigmentation has convinced me that it is definitely worth tackling the shoots of the problem, even if we don’t yet have the technology to cut it off at the root.
If the root cause of vitiligo is a specific defective gene that makes some of us susceptible to pigment loss, as some scientists believe, then the goal must be to devise a genetically engineered cure. Such a definitive solution would render every other vitiligo therapy unnecessary and spare millions of people a lot of misery. But, until that day comes - and it may not be far off - it is important to realise that there are other viable options available to vitiligo sufferers, including therapies that can halt and reverse pigment loss at any stage of its development (as my own experience proves).
One of the worst effects of being diagnosed with vitiligo is the feeling of helplessness that comes with being told you have an “incurable disease”. This description, so commonly used by dermatologists the world over, is enough to depress even the most optimistic individual. It can feel like a life sentence, like doors closing and robbing you of control over your own future. But the fact is that you do have control and you do have choices. At their simplest, these can be boiled down to four options:
These four options are not mutually exclusive: most of us have adopted a combination of all of them at different times. But the trouble with allowing yourself to drift - or maybe even ricochet impulsively - from one to the next and back again (as I did for many years) is that it is unsettling, exhausting and gets you nowhere. Not deciding on a definite approach to your vitiligo can, in fact, amount to a decision to be a victim for the rest of your life, snatching moments of contentment between the all too frequent reminders of your deep discontent. Choosing a definite path to follow can be an empowering psychological step: one that immediately reverses the balance of power between you and your white patches, putting you back in charge.
So which of the four options would I recommend you take? The one that makes you the happiest and healthiest of course. I can’t tell you which that would be (although it is pretty obvious which one it isn’t!)
It’s your choice
Number 1 might, arguably, involve the least hassle and the greatest level of contentment, as long as you had the right temperament to achieve it. Not many people are truly able to do this. I couldn’t, so it was not an option that was open to me. (Besides, to ignore a symptom like pigment loss is to ignore the possibility that your body is trying to warn you of underlying health issues.)
Number 2 is only included in the list so that you can put a big, thick red line through it and, hopefully, never give it another moment’s thought.
Number 3 is the most common, and immediate, choice for the majority of us. If we develop symptoms we go to our doctor – it’s obvious. However, whilst a handful of doctors around the world know how to handle cases of vitiligo, the chances of finding one are remote. The only thing your doctor or dermatologist is likely to know is how to do is diagnose it (which is the one good reason for making an initial appointment).
Number 4 is – in my opinion and in my experience – the best, most effective and empowering option of all and the one most likely to bring you psychological and physical wellbeing. Taking charge of my own therapy was the best decision I ever made and has brought benefits beyond my own health and happiness. The reason I say this is because, in reality, there is a fifth option open to us: and that is to reach out to others affected by vitiligo and offer them the benefit of our own empathy and experiences - but that opportunity is more likely to present itself once you have already chosen a positive approach for your own personal vitiligo journey.
Vitiligo has been a journey of discovery
It is ironic that, during the 5 decades I suffered with widespread vitiligo, I understood very little about it, yet in the 7 years since my re-pigmentation I have absorbed massive quantities of information on the subject. No doubt, this is partly because coping with the practical and psychological difficulties of living with the condition on a day-to-day basis required time and effort which left little of either to put into research. Added to that is the fact that part of my coping strategy was to cover up my white patches and try to forget about them. So, obviously, the last thing I felt motivated to do was make a study of them. Of course, there is also the fact that publicly available information on vitiligo was almost non-existent during those years and – perhaps most significantly of all – there was no internet for the majority of that time, so resources were scarce.
It was not until my own need for answers was effectively removed by my unexpected recovery that I found I was nevertheless fascinated by the subject and passionate about gathering and sharing information on the causes, effects and treatment of vitiligo. And, if there is one thing I have learned as a result of all my hours of detective work, it is that it is complicated.
Vitiligo is complex: but this presents opportunities
Of course, almost any disease (if vitiligo can be called that) is bound to seem complicated to someone like me, given that I have no medical training. But, based on my observations, this ranks me slightly behind the experts and significantly ahead of most doctors!
Given how complex the causes and processes behind pigment loss evidently are, there is no simple way to tackle it. That’s the bad news. The good news, I have come to believe, is that – precisely because there appear to be so many layers of causality involved – this means that there are also multiple ways of interrupting the process, thereby allowing the body to start healing itself. And most of these therapeutic opportunities are available to us all because they are based on nature and some basic logic. This means that we do have the power to take control of our own therapy.
There may not be much we can do about our defective genes but there is a lot we can do to halt the domino effect of events that can lead us from that state of susceptibility, all the way through the physiological maze of cause and effect, to the appearance of white patches on our skin. And by taking action we also stand to heal ourselves of the many other symptoms (poor digestion, poor nutritional status, fatigue, allergies, autoimmune conditions, etc., etc.) that so often accompany vitiligo but are rarely picked up on in that context by medical practitioners, not mention the feeling of helplessness I referred to earlier.
I have written a lot about taking responsibility for one’s own recovery in my blog (mainly from a nutritional angle, since this proved to be the key to mine) and I shall continue to write about it in as much detail as I can. But the short version comes down to this: vitiligo - and general health - responds to the following strategies if you are willing to explore them intelligently, consistently and patiently...
You needn't give vitiligo the green light
In short, regardless of whether or not vitiligo stems ultimately from a single root cause, there are certainly multiple subsequent events that need to occur in the body in order for a susceptibility to pigment loss to become vitiligo. It is as if we have a series of traffic lights inside us that - if left on green - will speed the flow of the disease from its starting point to its final destination (“Patchyskinsville”) and all we have to do, in order for this to happen, is nothing. Alternatively, we have the option to turn as many of those green light to red as we can. Every stop light is an opportunity to interrupt the progress of the disorder. This may not alter our genetic predisposition to pigment loss but it can certainly stop it dead, turn it around and send it back where it came from. Not only that, but halting the vitiligo traffic is also likely to give priority to all the healthy processes in our system to flow as they should, meaning that our overall health will likely improve at the same time.
Creating Real Pigment without the Sun
Summer is now in full swing, a fact that may or may not be cause for celebration if you have #vitiligo. Whether this season fills you with joy or with frustration, I hope that you will feel encouraged by some news I shall be referring to later in this post on the subject of #tanning.
But first, is it me, or are the months going by faster and faster? (OK– I know it’s an age thing.) Another World Vitiligo Day has come and gone and here we are already a week into July. Our summer so far in the north of England has been a mixed bag of changeable weather, which has developed into a strange pattern over the past week or so. Each day starts out wet, windy and cold (and I mean winter-cold) and then, bizarrely, at around 3pm, it blossoms into a bright, sunny afternoon, becoming progressively hotter as the evening approaches. A classic case of all four seasons in one day! This calls for several different outfits to suit the evolving conditions. Swathed in layers of winter woollies until mid-afternoon, I gradually peel these off one at a time, eventually changing into shorts, a vest top and flip-flops.
At last I am loving summer
These changes in the weather are unusual and extreme for the time of year but they are not nearly as dramatic as the change in my attitude to them. Until a few years ago I would have welcomed cold summer weather because it allowed me to cover up my white patches and feel “normal”. It meant I didn’t have to be reminded constantly of my two-tone skin because I could hide it under layers of clothing and pretend it didn’t exist. It’s not that I didn’t love to see blue skies. I longed to be able to enjoy carefree, sunny summer days, like all my friends and family did, but my heart used to sink at the prospect of warm weather because I was deeply unhappy in my own skin. But now, having regained most of the pigment that I had lost over my 50 years of vitiligo, I am the first to moan about the unseasonably chilly rain and (who would have thought?) the first to stretch out on a lounger at the merest glimpse of the sun’s rays breaking through the clouds. At last, I am loving summer, beach holidays and being outdoors at every opportunity as much as when I was a little girl – more so, even, because now I profoundly appreciate those things I missed out on for so many years.
Vitiligo can cause you to feel all sorts of emotions but despair does not have to be one of them.
The reason I am sharing this shift in my perception of summer is in the hope of spreading a little sunshine of my own and dispelling some of the clouds of doom that may be hanging over you if your vitiligo is getting you down. I remember very well how frustrating and downright depressing this time of year can be if you are trying to cope with relentless pigment loss. It is a time that can evoke feelings of dread and even despair, feelings that are easier to bury during the winter, but that surface every time swimming and barbecue season comes round again.
The message I am keen to spread, through all my blog posts, is that although vitiligo is bound to cause you to feel all sorts of emotions, #despair does not have to be one of them. When doctors tell you there is nothing that can be done about vitiligo and when the years pass with no breakthrough in the search for a cure, it is natural to feel yourself losing hope. But I believe there is every reason for vitiligo sufferers to feel hopeful.
Years ago most patients had no choice but to take the doctor’s word as gospel and the most we could do to verify the information we were given was to ask for a second opinion. Today the internet gives us access to countless stories of people who have improved their vitiligo in a variety of ways and countless more scholarly articles and scientific papers that document the advances being made in medical research. This means that not only can everyone with vitiligo try known treatments until they find the one that works best for them, but we can also educate ourselves on the causes of the condition and progress towards a permanent cure – something that I now believe is a certainty.
What form such a cure will take is still up for debate. But, given the relatively small amount of funding that goes directly to vitiligo research, the breakthrough may well come as a spin-off from other medical advances, possibly in the field of cancer research and genetics. Last year’s strides forward with T-cell therapy are just one example of this.
SIK inhibitor could lead to a cure for vitiligo and other autoimmune conditions
Another milestone, reported in the media just last month, was brought to my attention by a vitiligo friend (thanks for flagging this story up, David :)). Scientists at Massachusetts General Hospital have come up with a novel approach to preventing sun-induced skin cancer by developing an experimental topical, small-molecule drug called a SIK inhibitor that produces a genuine “suntan” but without the need for UV exposure. If the drug is developed successfully and becomes commercially available, it could have exciting implications for vitiligo sufferers, as well as drastically reducing the number of skin cancer cases by providing effective sun protection to all skin types. Whilst the research paper makes no mention of vitiligo, it does indicate that the drug is even capable of developing a dark tan in skin types with red hair, despite the fact that redheads carry a genetic mutation that inhibits tanning. Extending this discovery to the treatment of vitiligo seems, at least to me, to be a logical spin-off. And this patent (bearing two of the names from the Massachusetts Hospital Team) on SIK inhibitors for use in treating inflammatory and/or immune disorders, including vitiligo, would suggest that moves are already being made in this direction.
It is too soon to say whether or not this particular approach will be the one that provides the long-awaited #cure-for-vitiligo. But early indications look hopeful and, if not this, then some other line of research will inevitably bear fruit. So, my recommendation in the meantime is to enjoy the sunshine the best way you are able, be optimistic about whatever vitiligo treatments or strategies you may be using and, above all, remind yourself that a vitiligo cure has never been as close as it is right now!
Artificial versus natural sun protecion
After a couple of weeks of blue skies and mild temperatures (most unusual for March / April in the north of England), this taste of things to come has made me impatient for the long, warm days of summer. That said, sunny conditions are never a certainty in our neck of the woods, but I live in hope. So, with this in mind, I am going to be optimistic (literally looking on the bright side). I am going to risk putting a jinx on the British summer by broaching the deceptively harmless subject of #sunglasses.
Most of us own at least one pair of these practical yet stylish accessories at any one time and many of us expend considerable time and money on selecting them. They can be just as much a fashion statement as our garments and hair style and a top quality pair can cost a lot more than an entire outfit. In fact, many people regard their "sunnies" as a vital component of their seasonal wardrobe, as important to their summer look as sporting sun-bronzed skin. But, whilst a cool pair of shades can, undeniably, set off a golden tan to perfection, some people believe they may also sabotage your efforts to develop one in the first place. In short, there is a hotly debated (no pun intended) theory that wearing sunglasses for too long could cause sunburn by interfering with the body's natural tanning process. For most people, this possibility is nothing more than a quirky and obscure snippet to be filed away as a potential party piece, should you ever need it. But for anyone with #vitiligo, its possible implications might be much more significant.
Our love-hate relationship with the sun
Extensive reading on the pigmentation process, coupled with my own experience of vitiligo recovery, have convinced me that #sunshine is a bit like food. It is one of life’s great pleasures and is absolutely essential to our survival. But it needs to be approached thoughtfully and taken in moderation. This advice, of course, applies to every living thing, but more especially to those with a pigmentation disorder. Through personal experience, I have learned that getting too much sun can be as counterproductive as too little.
So how does the pigmentation process actually work and why do some claim wearing sunglasses interferes with it?
Well, first of all, skin pigment is not just for decoration: it exists for a practical reason. It is the body’s way of protecting itself against UV damage. A person with normal skin produces a certain amount of melanin whether they are exposed to sunshine or not. The amount of melanin present in their skin determines how fair or deep their natural colouring is. Our natural skin colour is determined by our genes and exists in order to provide protection to the deeper layers of the skin. As such, it tends to give a clue as to where our ancestors came from: peoples who lived nearer the equator for generations generally have more melanin and darker skin than those who lived far away from the equator where there is much less sunshine and therefore less need of UV protection.
When the skin is exposed to sunshine melanin production increases further to provide even more protection. This is what we call a sun tan. Deeper skin tones usually tan easily because they have more melanin to start with. Fairer skins tend to burn if sun exposure is too intense or too long because they have relatively little melanin to start with and can’t make sufficient quantities fast enough to keep pace with the UV damage. This is why paler people need to sunbathe more carefully and more gradually if they want to avoid looking like a boiled lobster by the end of the first warm day of summer.
the eyes may play a part in tanning
The question of whether or not wearing sunglasses interferes with the tanning process seems to hinge on exactly how the mechanism by which this increase in melanin production is actually triggered. The claim is certainly not as crazy as it might at first sound. The logic goes that the tanning process is largely triggered via the eyes. The pigmentation process is regulated by our hormones. UV exposure stimulates the pituitary gland, located at the base of our brain close to the optic nerves, into producing MSH (Melanin Stimulating Hormone) into our bloodstream. It is this hormone that then causes the pigment producing cells (melanocytes) to produce a protective tan. The connection between the pituitary gland and the optic nerve is significant in this concept because it is the pituitary gland’s ability to sense light via the eyes that triggers the whole process. Therefore, filtering out UV light with sunglasses should, in theory, impair the body's ability to protect the skin against sunburn. This also has implications for the risk of developing skin cancer.
If this is true, we would all be well advised to minimise our use of sunglasses when we are in strong sunlight. But, of course, the irony of this is that this is the very time when we tend to need them. Not only is squinting in bright light uncomfortable and likely to produce wrinkles but excessive exposure without the appropriate eye protection can cause eye damage, including cataracts.
So are sunglasses good or bad?
Before you throw out your treasured Ray-Bans, there are plenty of opposing views on this topic which also appear to make sense if we accept that the trigger for the tanning process is not wholly reliant on the optic nerves. This theory says that melanin is produced in response to detecting UV light on the skin itself and therefore wearing sunglasses should make little or no difference to tanning. But then, it begs the question: does wearing a sunscreen trick the body into thinking the UV light is less intense than it really is. If this is true, then the risk of burning once your SPF product has worn or washed off is probably higher than if you hadn't applied one in the first place.
From what I have read so far on this subject, there is no definite consensus among experts. But, as ever, intuition tells me that common sense and moderation are the best guides as to how reliant we should be on sun protection in general. And I have some tips of my own for others who have vitiligo and are wondering how to approach this whole issue.
sun protection for vitiligo, yes or no?
The therapeutic value of sunlight is one thing that is beyond question. Without it we would die. And in the context of vitiligo (and many other skin conditions) UV therapy is the cornerstone of most effective treatments. It was certainly a key part of my own success story. On the other hand, sunburn is one of the events that is known to trigger de-pigmentation in those who have a susceptibility to it. Similarly, it seems that there is at least a fair chance that wearing sunglasses and sunscreens could be counterproductive since some credible theories exists to suggest they hinder the body's natural detection and defence system against the dangers posed by UV radiation.
The answer to this dilemma, it seems to me, is to ensure we get regular, but moderate, exposure to sunshine. It seems that, in the case of sunglasses, it is an over-reliance on them (i.e. wearing them, uninterrupted, for prolonged periods of time) that is likely to be a problem. So, my view is that it is best to save your sunglasses (good quality ones, please) for the times you really need them, like when the sun is causing you real discomfort or when driving for example. Squinting may cause a few wrinkles around the eyes (laughter lines, I mean) but personally I don't mind risking the odd one or two if it means my skin continues to produce healthy pigment. Wearing them throughout the summer might be tempting if you suffer from vitiligo "Panda Eyes" (as I used to call mine) but in my opinion it is unlikely your eye area will ever re-pigment if you constantly keep it hidden from the sun.
And, when it comes to sunscreens, I prefer not to block the healing rays of the sun by using these myself unless I know that I am going to be exposed to intense UV for prolonged periods of time with no other means of protection. On those occasions, I use as natural a product as I can find (this is my current favourite sun cream) because products containing harsh chemicals can be as bad for vitiligo - or worse - than sunburn itself.
In short, sunshine is a two edged sword for people with vitiligo. But I am convinced that it is far more beneficial than it is harmful, as long as we apply common sense and moderation to our relationship with it.
as effective therapy for vitiligo
There was a time when any #vitiligo patient who dared mention the word “vitamin” in the presence of their doctor would have earned themselves a patronising smirk and a dismissive assertion that “no evidence exists to show #nutritional-supplementation has any effect on the condition whatsoever”. Sadly, that time is not yet firmly in the past. But I fervently hope, and believe, that an excellent new publication called “The Use of Vitamin Therapy for the Treatment of Vitiligo” will help to consign this kind of reaction to history.
The woeful ignorance of most mainstream doctors on the subject of nutritional therapy for vitiligo was clearly a key motivation for the book's author, Audrey VanStockum @Recouleur. As she explains in her preface, she suffered with vitiligo and psoriasis for years, was misdiagnosed for both conditions and visited a total of 23 clinicians over a 14 year period in her search for answers to her skin problems. She realised that her negative experience highlighted “a paucity of information and specialized training” and it puzzled her that so few healthcare providers seemed to have any knowledge of effective vitiligo treatments, even though published research on the subject - dating as far back as 1945 - was openly available. Her frustration at this state of affairs led her to start doing her own research into the subject of nutritional therapy, trying various vitamin and mineral supplements herself and observing her responses. Her wide reading on the subject and experiments in self-treatment resulted in some re-pigmentation and, ultimately to the creation of her own dietary supplement called Recouleur.
Audrey's expertise in the area of nutritional therapy is a wonderful example of how frustration can sometimes be the mother of invention. The idea that we need to take responsibility for our own vitiligo treatment is a familiar one for many of us because we too have repeatedly met the same brick walls when trying to find constructive help from the medical community. Like Audrey, some of us will have wondered why our doctors have apparently never come across any of the research that we ourselves may have seen whilst trawling the internet for solutions and why it is that they are so resistant to the suggestion that nutritional therapy should be prescribed for vitiligo. In fact, I have sometimes advised vitiligo friends to avoid the subject of food and supplementation completely when visiting their doctor because I could predict the likely reaction and did not want anyone to rain on their parade. My view was that the proof of the pudding was in the re-pigmentation that people were achieving through supplementation and that trying to persuade the medical profession to recognise these successes was futile. But that was because it was not a straightforward matter to have the relevant research at one's fingertips during the typical doctor-patient consultation. Well, that was before Audrey's new publication, which – in addition to its main aim of informing vitiligo sufferers themselves - could also easily be used as a way of presenting their doctors with the nutritional facts, all in one well researched and clearly written 40-page booklet.
One of the strengths of “The Use of Vitamin Therapy for the treatment of Vitiligo” is, in my opinion, the fact that it strikes the perfect balance between scientific detail and simple explanation so that it makes suitable reading for anyone, regardless of whether they have a scientific background or not – and regardless of their prior understanding of vitiligo. The author assumes nil knowledge of the subject, explaining what vitiligo is and the processes thought to be involved in its development. She then reviews key vitamins and minerals used by the body to produce skin pigment and describes the role played by each one, as well as the adverse effects of deficiencies. And, crucially, she backs up all of the information with relevant research studies. As I read through the book, I found references that I had not come across before, as well as some that I had seen but had since lost sight of in the vastness of the internet. So, it was extremely useful to have such a comprehensive overview of the subject and its associated literature all in one place and set out in such a clear and concise way.
I also found myself saying (aloud) “YES!!!” when I read the chapter on what Audrey has termed “The Three-Prong Approach” to vitiligo treatment because her view on this makes total sense and resonates with my own thoughts exactly. This approach states that that the most effective vitiligo therapies involve one component from each of the following categories:
In this way, the condition is being addressed from the inside out as well as the outside in and is benefiting from UV exposure (nature's way of stimulating pigment) as well as active, therapeutic ingredients (to treat the condition).
In my experience, most doctors only ever try to treat vitiligo “from the outside in” (i.e. they might use one, or both, of categories 2 and 3). Many do not even advocate any treatment at all because they claim that improvements are minimal and, at best, temporary. However, I am convinced that this is because they omit category number 1. They neglect to include nutritional therapy in their treatments. It stands to reason that external therapies may help treat skin symptoms but only internal ones can hope to address the root cause and prevent symptoms from recurring over the longer term.
The medical profession has been slow to pick up on the findings of research done as long ago as the 1930s and 1940s that clearly pointed to digestive deficiencies as being at the root of vitiligo. Audrey VanStockum draws on the findings of this research, further supported by anecdotal evidence of vitiligo sufferers whose pigmentation improved with improvements to their diet.
There is no question in my mind that correct nutritional #therapy can reverse vitiligo. Audrey and countless others (including myself) are living proof of the fact. But our modern health systems are heavily biased toward pharmaceutical and surgical solutions, no doubt because these are the areas of research that tend to receive the most funding. Concepts of healthy eating and nutritional supplementation as a means of restoring health receive very little serious attention and therefore do not produce the amounts of clinical research data demanded nowadays by the medical establishment. This is frustrating but perhaps it is understandable. Sophisticated drugs, stem-cell therapies and ground-breaking surgical procedures are needed for all kinds of life-threatening conditions that afflict the human race and they are super-expensive to develop. So this is where the funding tends to go. (And, if we want to be cynical about it, these are the treatments that can be patented and become lucrative for thedrug companies and professionals who administer them. Whereas foods and nutritional supplements already exist and are widely available.) What is lacking is not simply new clinical data to support nutritional therapies but an awareness and acknowledgement on the part of doctors that this approach is sometimes the most effective way of treating certain conditions, and that one of those conditions is vitiligo. And, to be fair, there is another requirement, if things are going to change: and that is individual patient responsibility not to be over-reliant for their own state of health on the men and women in white coats. We need to take charge of our own recovery.
In the final paragraphs of the book, Audrey puts all of this in a nutshell: she says, “First, patients need to be their own health advocates and seek solutions for treatable conditions instead of accepting any answers physicians provide, such as “Nothing can be done,” which is said all too frequently to vitiligo patients. Second, physicians need to be open to complementary therapies for treating highly challenging diseases that do not always respond to conventional treatments. Third, more robust studies are needed to analyze the role of vitamins in treating vitiligo; and fourth, dermatological residencies should include a tract on the role of nutrition.”
Obviously, there is far too much detailed information in this excellent publication for me to do more than scrape the surface in this blog. So, I would recommend it as essential reading for anyone, from any background (scientific or not) who wants to understand the relationship between nutrition and vitiligo and how nutritional therapy can help to treat this complex and frustrating condition.
Congratulations, Audrey - and thank you for sharing your knowledge!
My name is Caroline.