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.
... and 5 reasons to love summer
As we approach the end of summer 2018 (an unusually long, hot and dry one for us here in the north west of England) I find myself trying to hold back time, willing the trees to hang on to their leaves and wishing the nights were not drawing in that little bit more with each passing day. People often complain about the weather in our neck of the woods because summer temperatures and clear skies rarely match those in the south and east of the country. But, in a year when so many parts of the world have experienced extreme heat and freak flooding, we have been blessed with four months of uninterrupted and near-perfect gloriousness. And I confess that the prospect of leaving this behind and braving another cold, wet and windy northern winter sends my heart sinking into my fur-lined boots.
How the changing seasons can affect vitiligo
I realise that my enthusiasm for the lazy, hazy days of summer is not typical of someone affected by #vitiligo. In fact, it is so far removed from my past response to the season as to be almost shocking in its contrast. Before my vitiligo reversed (over eight years ago now) “good weather” used to be something other, “normal”, people smiled about but which created nothing but hassle and depression in my little world. This was a world that consisted of impossible clothes choices, time-consuming camouflage routines, an overwhelming sense of being different from everyone around me and an envious resentment at missing out on the fun and freedom that most people associate with warmth and sunshine.
Some people with vitiligo (those who do not let their appearance define them and are strong enough to meet curious stares and thoughtless questions head-on) may find my former attitude negative and destructive, and they would be justified. I did try to fight it – and sometimes succeeding for a while – but it was always there inside me and the very effort of suppressing it just added to the overwhelming sense of exhaustion that comes with constantly struggling to hide a progressively disfiguring condition behind a facade of normality. Although this may sound overly dramatic, many readers will, I am sure, understand exactly how I felt because they will be feeling the same way. If the state of mind I have just described is familiar to you, then you are probably only too happy to see the days shorten and the winter sweaters come out of mothballs.
Whatever your own perspective on this subject may be, I’d like to take this opportunity to remind us all that there are always as many reasons to embrace the changing seasons (assuming you live in a part of the world that has such changes) as there are to regret them. So, here – in true blogging tradition – are 5 reasons I would suggest everyone with vitiligo look forward to each summer and 5 reasons to welcome winter…
Reasons to love summer (and look forward to the next one)
Reasons to welcome winter
The best season is always NOW!
I feel immensely grateful that I am able to embrace the summer months now that I have my normal skin colour back again. But maybe I need to remind myself that winter has its own delights which should be also be savoured. For so many years I longed for each summer to end so that I could hide my patchy skin from the world for another few months. But perhaps the heightened sense of euphoria that I now feel each summertime has dulled my appreciation of the rest of the year.
It is this realisation that has prompted me to look again at all the good things winter has to offer – after all, no one wants to wish their life away yearning for the months to pass: life is far too short as it is. So, this year, I am determined to embrace the shorter days, the dramatically leafless trees, the frozen ground and the icy winds because, when you come to think about it more deeply, there are actually countless reasons (not just five) to appreciate all the seasons of the year. And the best way to enjoy each one is to recognise the fact that the best time of year is always right NOW.
Thanks to everyone who has been willing to share their re-pigmentation stories
This month's post is just a quick one, as so many people are on their holidays at the moment (hopefully, taking a break from their gadgets) and because I shall also be away for a couple of weeks myself enjoying some extra sunshine.
Not that there has been any shortage of fabulous weather here this summer. Being British, temperatures in the high 20s and even mid-30s have meant that our nation's favourite hobby (talking about the weather) has occupied even more of our time and attention than usual over the past several months. Comments like "If you think it's hot here, you should have been in such-and-such a place last week. Now THAT was hot!" are to be heard all over the country and much of the normally pasty-faced portion of our population that owe their colouring to an Anglo-saxon heritage have been hanging out in pavement cafes and lounging on beaches at every opportunity, showing off their deep Mediterranean tan and feeling ever-so-European in spite of all the talk of Brexit.
Not everyone shares a love of sunny weather though. Long, hot summers can be a real endurance test for anyone suffering from vitiligo and the question of "should I or shouldn't I expose my skin to the sun?" can be a difficult one, not just due to possible embarrassment at revealing those white patches, but also because of the risk of burning them. But the fact is that it takes UV light to stimulate the body's tanning process and, as long as (in my opinion and in my personal experience) you also ensure you are getting the right nutrition for the purpose, sunshine can be the best therapy of all for vitiligo.
One thing is for sure, it's harder to ignore your vitiligo when the weather is hot and sunny. And this summer I have been receiving a much higher number of emails on the subject of how to cope with it in these conditions. But I'm happy to say that I have also received a higher number than ever of good news stories from those of you who have been re-gaining lost pigment and I am grateful to everyone who has offered to share their story or their photos on the site in order to give hope to all the vitiligo sufferers out there who have been told that the condition is hopeless or irreversible. I am constantly adding to the testimonials page on this site whenever I get the time and obviously only with the consent of each individual. I understand perfectly that not everyone wants to have their pictures published, even if they are mainly anonymous. But I would like to publicly thank everyone who has taken the time to contact me with their #vitiligo-success-stories and encouraging comments over the years (not just this summer) and, in particular, to thank those of you who have specifically asked me to share your feedback, knowing how uplifting this is likely to be for others. I look forward to receiving, and sharing, a lot more as time goes by.
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.
Lessons in vitiligo nutrition
My story has been one of trial and error, serendipity and good fortune. Widespread #vitiligo and generally suboptimal health had become my accepted norm by the time I reached adulthood and this continued to be my lot in life until the age of 50. Only then did a fairly random set of circumstances lead to a dramatic improvement in my general health and an almost total re-pigmentation. Yet it has taken me the past eight years since that turn-around in my fortunes to figure out some of the science behind my recovery – and I don’t suppose I shall ever stop figuring.
A brief background to my recovery
Back in 2010 I had been working in the beauty industry for several decades and had trade accounts with a number of skin care and cosmetics companies. When also faced with the opportunity to try out some of their high quality nutritional supplements at trade prices, I began taking a number of them myself – more or less experimentally – based on certain assumptions I made at the time about how they might help my various chronic health issues. For example, I started taking Boost capsules in the (not very serious) hope that they might help my vitiligo, given that they were formulated to optimise the body’s ability to acquire a natural sun tan. (The idea seemed logical but I only held out a faint hope.) I started taking Five a Day (a green food formula) believing that it might provide me with a base level of good #nutrition, perhaps compensate for my less than perfect diet, possibly improve my IBS symptoms and help my vitiligo by increasing antioxidant levels. And I began taking collagen supplements mainly because I had read about their therapeutic value for arthritis (and for wrinkles too!).
Of course, the fact that I began taking multiple supplements all at the same time made the task of correlating cause and effect more difficult. It was impossible to be sure which supplements were producing which results or whether, in fact, it was the synergistic effect of two or more of them that resulted in such a revolution in my state of health. But at least the advantage of plunging straight in, all nutritional guns blazing as it were, was that I was able to enjoy all of the benefits sooner than if I had introduced each product more scientifically, one at a time. So, if I had to do it all over again I really don’t think I would have done anything different.
Well, all of this nutritional experimentation did indeed produce the intended results - more than I ever could have hoped. Not only did virtually all of my extensive vitiligo re-pigment over a period of 18 months or so, but my IBS symptoms and arthritis went from seriously debilitating to barely noticeable on good days and just moderately annoying on the dwindling number of bad ones. Yet it was much later that I began to realise that my initial assumptions about the respective roles these various supplements would play had only scratched the surface of the truth. Even now I am still discovering new insights into which ingredients may, in fact, have been responsible for which effects and I am gradually discovering more of the science behind these ingredients and their effects on my body.
Digestive benefits of collagen supplementation
Possibly the most surprising of these discoveries was the fact that the therapeutic effects of #collagen-supplementation are not limited to helping with arthritis, reducing wrinkles and strengthening hair and nails. And, whilst I have always recognised Boost and Five a Day as having had the most direct impact on my re-pigmentation, collagen almost certainly played its part too.
From what I have managed to glean from various research papers and scientific documents, there are some significant links between collagen status and vitiligo. (I blogged previously on these and you will find them towards the bottom of this page.) And, if what I have read on a number of health-related websites is correct, then collagen hydrolysate (the form used for supplementation) apparently also improves #digestion by helping to heal #Leaky-Gut-Syndrome, which is thought to be a major underlying cause of vitiligo and many other chronic and autoimmune conditions.
This site, in particular, has some helpful insights on the subject. Evidently, the digestive benefits of collagen supplementation include the following:
So it may well be that taking collagen supplements contributed more to my recovery than just improving my arthritic hip and making my skin look and feel smoother. It seems more than likely that it also helped, not only with my Irritable Bowel, but also with the re-pigmentation process itself by improving my poor nutritional absorption and, in turn, maximising the effects of the nutrients in my diet and in the other supplements I took.
Now that certainly is (highly nutritious) food for thought!
2 conclusions and 4 tips for UV exposure
Many of us are finally emerging from what has seemed like endless chilly winter months and are looking forward to the light and warmth of summer. As the years since my re-pigmentation pass (and, it has to be said, as I get older) I find I crave sunlight more and more. So springtime finds me in a state of eager anticipation, keen to dust off our cobwebby sun loungers and get out into those healing rays after such a long time swaddled in woollies and fleeces.
The years I used to spend dreading hot and sunny weather seem to belong to another life now, although the memory of those feelings is still very clear in my mind. The prospect of having to cover up my vitiligo patches with clothing or cosmetics to avoid social embarrassment, when everyone around me was baring their flesh with carefree abandon, used to plunge me into a state of gloom, bordering on bitterness and self-pity, unattractive emotions that I used to mask just as carefully as I camouflaged my white patches. The whole rigmarole of hiding my vitiligo during the summer, and hiding my feelings about it, was troublesome and sometimes quite exhausting. I simply never came to terms with the condition sufficiently to go anywhere without my make-up or sunless tan on or my flesh expertly covered in well-chosen clothing. This often left me feeling tense and on edge throughout the very season when I should have been relaxing and enjoying outdoor fun with family and friends.
Nowadays, the only time I revisit those emotions is when I hear from others who are going through the same situation as I did back then. One of the most frequently asked questions I receive each spring and summer relates to the pros and cons of sun exposure: whether or not it should be avoided, whether sun protection should be used and, if so, what kind, etc.
So, in this blog, I would like to pass on some of my own experiences and impressions around this issue, in case you are wrestling with it yourself at the moment. The following comments are based on my own observations, as opposed to any formal, scientific evidence. But I hope you find them useful anyway.
Despite my first small patches of vitiligo developing when I was just a toddler, family photos show that I did otherwise develop a light, even tan whenever I spent time outdoors. By the time I reached my teens I had come to realise that what had become, by then, my annual sunbathing ritual in pursuit of a fashionable tan was leaving me with several new vitiligo lesions each summer. My perception of this (and I still believe this to be true) was that my sunbathing was not the cause of my pigment loss but that it simply revealed a process that had been occurring throughout the rest of the year.
I could see that the condition was spreading and it began to feel like a race against the inevitable to see how many more years I could enjoy developing a natural tan (with the aid, by then, of some camouflage here and there). I sensed that, sooner or later, I would have to start avoiding the sun altogether so as to make the contrast between my vitiligo and my normal skin less obvious. Eventually, the effort involved in trying to tan at the same time as hiding my white splotches became too much, added to which the de-pigmented skin was very prone to sunburn. I used to find I could only stay out in strong sunshine for about a minute before it started to burn. I used to feel myself frazzling, almost as if my skin was in contact with a red-hot poker. So I started to avoid sun exposure as much as possible, which I found quite depressing.
I now know that avoiding the sun is not only bad for morale but it further lowers vitamin D levels, which are typically lower than normal in vitiligo sufferers to start with. And even if you use sun protection creams you increase the risk of chemically aggravating your vitiligo. So, if sunbathing makes vitiligo patches burn and increases the contrast between them and the surrounding skin and SPFs are best avoided, what is a person supposed to do?
2 conclusions about sunshine and vitiligo
Well, my own experiences over the last 8 years and all of the information that I have absorbed on the subject have led me to the following conclusion: that UV light (whether sunlight or artificial UV) helps to reverse vitiligo but generally only in the following circumstances …
I was one of those cases for whom phototherapy alone was completely unsuccessful. I had tried PUVA as a young woman but it had no effect whatsoever on my vitiligo, except to make it sore. It turned pink, then pure white again.
I have come to believe that this is what happens when you try to “force“ the tanning process to occur (in this case by simply using a photosensitising agent plus UV light) without giving the body sufficient nutrients for the pigmentation to take place.
It was not until I had started to provide my body with supplemental tanning-related nutrients (in the form of Boost) and strong antioxidant protection (plus a variety of additional nutritional support in the form of Five a Day green formula) that UV exposure began to re-pigment my vitiligo patches instead of burning them. This experience confirmed my suspicions that the digestive problems I had always had since early childhood, must have left me depleted in these nutrients and that this was the reason for my vitiligo (as well as for the Chronic Fatigue that had plagued me since early adulthood).
Once I had been taking supplements for a week or so I noticed I was able to stay outside for significantly longer without burning. As a result of doing this on a regular basis for several weeks, my pigment started to return and this process continued until virtually all of my natural colour had returned. When I then switched to narrowband UVB therapy through the winter months I found this protocol a dramatically different experience from my previous ill-fated experiment with PUVA. The UVB perpetuated the rapid re-pigmentation that had started during the summer and actually seemed to accelerate it.
My feeling is that, as long as you are providing correct nutritional support to your body, it does not make a huge difference whether you use natural sunshine or whether you opt for phototherapy instead. Phototherapy has the advantage of being available year round and of being easier to administer with scientific precision. But sunshine is free of charge and a much more pleasant relaxing experience :)
My top 4 tips on UV exposure
Since people often contact me and ask for my views on the use of sun protection products, here four of my top tips:
I hope my observations on this topic have been helpful in some way. It’s fair to say that my relationship with sunshine has changed dramatically over the years. As a child I loved it. As a teenager I struggled to hang on to that love. For much of my adult life I feared and avoided it. Now I see it as a source of warmth, relaxation, enjoyment and – above all – healing. I really hope that if there is anyone reading this and finding themselves in a dark place this summer (either literally or emotionally) you might start to view sunny weather positively once more. Instead of dreading it, maybe you will decide to welcome it and use it as a vital part of your journey back to health. I do hope so.
Will vitiligo cure be a magic bullet?
Last month I wrote about the exciting progress being made towards an eventual cure for vitiligo by Dr John Harris and his team at the Vitiligo Clinic and Research Center at the University of Massachusetts Medical School. In particular, I celebrated Dr Harris’ unequivocal assertion that the damage caused to pigment cells in vitiligo is fully reversible. To me, confirmation of this fact from such an eminent expert was more thrilling than any of the detail about experimental drugs currently being trialled. I found it thrilling because it not only reinforced my own experience of vitiligo reversal but it was a clear indication that it is no longer a question of whether a vitiligo cure will be developed, but rather when.
The fact that clinical trials are actually going on now and that the first generation of drugs is likely to emerge within the next couple of years is obviously good news. These medications promise to be a godsend to the millions of people around the world for whom pigment loss can be psychologically devastating and socially disabling. Getting rid of the white patches that are the only obvious sign of illness in vitiligo has been a shared dream for countless sufferers, therapists and researchers alike. And it now seems highly likely this dream will be realised within the next few years.
I, for one, am delighted at this prospect. It has the potential to change the lives of an estimated 1- 2% of the world’s population for the better. And, whilst my own vitiligo has virtually disappeared, I am always aware that the condition could return if I were to stop the nutritional therapy that has reversed it or else expose myself to certain triggers.
The research so far has identified what appears to be the core pathway for the development of vitiligo, which involves destructive autoimmune activity and an abnormality of the melanocytes (pigment cells). The aim is to pinpoint (or at least narrow down considerably) the process by which the immune system attacks melanocytes, as opposed to other parts of the body, and turn that particular “switch” off without deactivating the whole immune system. But Dr Harris makes no secret of the fact that these initial medications will not offer a perfect cure.
If I understand what I have read on this subject correctly, it is not yet possible to produce a drug that targets the autoimmune threat to pigment cells with pinpoint precision. So the best that can be expected of the first wave of medications is that they will halt and reverse vitiligo but may also increase susceptibility to certain other conditions such as shingles.
What do we mean by "a real cure"?
This begs the question: what do we really mean when we talk about a vitiligo cure? So-called magic bullets rarely, if ever, perform perfect medical miracles. Drugs usually come with various limitations, side effects or other unintended drawbacks, which may or may not later be minimised through continued research and development. And, of course, they always come at a price because medical research is an expensive business and pharmaceutical companies are not generally known for their charitable work. So, optimistic though I am, I am also aware that the first new treatments your doctor is likely to prescribe for your vitiligo will not be perfect and they will not be cheap.
In a sense, you could say that this is no different from the current state of affairs. We already have access to numerous imperfect vitiligo treatments and none of them (except for sun exposure) is free. So, as long as the new drugs prove to be better at re-pigmenting vitiligo lesions than current options, then at least modern medicine will have succeeded in alleviating a lot of psychological suffering by providing a cosmetic solution to the problem. And that is good. But I very much hope that vitiligo research will not stop there. Because I do not believe that eradicating skin de-pigmentation is necessarily the same thing as curing a patient. And, as patients, I think we need to be aware of that concept so that we don’t find ourselves relinquishing all responsibility for our wider health just because our skin reverts to its normal colour. I believe we will still need to ask two important questions: what caused the pigment loss in the first place; and has the drug fixed that?
Curing white patches or curing people?
Five years ago in this blog, I posed the question: is vitiligo a disease or a symptom? If it is a disease, then any treatment that succeeds in permanently eradicating de-pigmentation will, deservedly, be hailed as a cure. But if it is (as I believe) a symptom, then it will only have succeeded in providing a cosmetic solution. It will not have addressed the reason for the symptom. And, whilst that would still be a life-changing achievement for millions, it is worth being aware that this could present additional risks, aside from the kinds of side-effects that might be considered acceptable (like the odd case of shingles).
Not being a scientist myself, I can only use my common sense and limited knowledge to speculate as to what these risks might be but an increased susceptibility to various pathogens (and maybe not just minor ones) is evidently one. For another, I imagine that blocking autoimmune attacks against melanocytes is not the same thing as curing autoimmune disease so it might cause the immune system to redirect its attacks to other healthy cells instead. And, as I indicated earlier, eradicating a symptom like pigment loss may be a bit like removing the safety warning signs from a faulty piece of equipment. It may give us a false sense of security about the state of our health.
Am I pouring cold water on the prospect of a "vitiligo cure"? No -absolutely not. It is what I have spent the major portion of my life hoping and praying for. And I am still eagerly looking forward to the day when doctors will be able to offer vitiligo patients a reliable way of reversing their pigment loss. But I am just sounding a warning note that using drugs designed purely to return the skin to its normal colour will not necessarily be the same thing as restoring the individual to health.
Experts agree that vitiligo is a multifactorial condition. In other words, a complex combination of factors are involved in its development and these are not even necessarily the same in every case. For myself, and many others I have come into contact with over the past 8 years, an underlying cause of our vitiligo is evidently poor nutritional absorption, due to digestive abnormalities. And these will still need to be addressed if we want to be free of all autoimmune diseases and enjoy full health.
So, whilst I am very excited to think that we are about to enter a pioneering stage in medical vitiligo treatment, one that promises to provide the best cosmetic solution to date, I anticipate that the underlying health problems that cause de-pigmentation in the first place will still need to be addressed before these medications can truly be called a perfect cure.
Damage to pigment cells is not permanent
Vitiligo is something none of us asks for and most of us would rather live without. Of course, there are exceptions to every rule. I was surprised the other day to read about Bashir Aziz, from London who has so successfully come to terms with his vitiligo that he is actually disappointed to discover that he is spontaneously re-pigmenting! His attitude is a startling demonstration that, whilst we do not have any choice as to whether or not we develop a condition like vitiligo, we do have a choice as to how we respond to it.
Nevertheless, the struggle to overcome the emotional response to losing our skin colour can prove too much for many of us, in spite of our best efforts. Personally, I never came to terms with my mine (unless feeling resigned to something counts as coming to terms with it). So I was completely thrilled and grateful beyond my wildest dreams when I re-pigmented. And I am utterly delighted whenever I hear of others experiencing the same thing because I know what a life-changing experience it is.
Vitiligo can be especially hard on parents
Knowing how deeply disturbing and depressing the inexplicable and piecemeal loss of one’s natural skin colour can be, my heart goes out to everyone affected by this experience, and especially to parents whose children may develop the disorder. I often receive emails from mothers and fathers who typically express fears that their children will either inherit vitiligo from them or, if their child already has the condition, they worry that it will lead to psychological or social difficulties in the future. Their concerns that their children will be miserable as a result - and their sense of frustration and helplessness at the lack of a cure - is often heartbreaking. However, as I always tell those parents who contact me, I truly believe that there have never been as many reasons to be optimistic about the future of vitiligo sufferers as there are today. This skin condition may have been minimised and largely overlooked by the medical and scientific community for generations but I am glad to say that this state of affairs is finally changing.
Latest vitiligo research video
I recently came across an exciting article by Erika Page on a website called Living Dappled. Erika has vitiligo and is clearly very committed to helping others with the condition by providing encouragement and information, particularly aimed at supporting female sufferers. As part of this project she has embarked on a series of video interviews with #vitiligo-experts in which she asks them to share 5 points of interest. The first of these interviews was with Dr John Harris, Director of the University of Massachusetts Vitiligo Clinic and Research Center. The live video interview gives a fascinating and immensely encouraging insight into the vitiligo research being done there. You can read Erika's summary of Dr Harris' five points - and view the whole video - on this page.
"Vitiligo is fully reversible"
Having watched the interview with Dr Harris, I felt encouraged on a number of levels. For a start, it is unusual to hear a scientist speak about a complex field of research in such clear and simple language. It is obvious that his commitment to finding effective treatments for vitiligo is his passion, not just a job. And I found it refreshing that he is evidently so in tune with the patient’s point of view, which I suppose is due to the fact that he is a clinical dermatologist as well as a research scientist, so he gets to see first hand how vitiligo affects people on a human level.
Just knowing that serious #vitiligo-research is actually going on and has identified the key pathway involved in the development of vitiligo (a combination of autoimmunity and abnormal melanocytes) is encouraging. And realising that research has progressed to a stage where clinical trials using drugs designed to "switch off" the autoimmune pathway that attacks melanocytes - are well underway is reassuring. Add to that the fact that a number of pharmaceutical companies are finally showing an interest in funding vitiligo research and you realise that these are significant strides in the direction of producing a long-awaited cure.
But, for me, the most exciting moment in the whole interview was Dr Harris’ categorical statement that, unlike the cellular damage associated with certain other autoimmune conditions, the damage done to pigment cells in vitiligo is fully reversible. The information itself was not the cause of my excitement (because, after all, my own re-pigmentation after 50 years clearly demonstrates the truth of his statement). What really made me sit up and rewind the video a couple of times was hearing someone with his professional credibility confirm it publicly. For generations, too many doctors the world over have repeated a mantra of doom and gloom: they have told countless thousands of patients that their pigment cells are dead, that white patches never recover, that there are no cures and that treatments aren’t worth trying because they don’t work. Well, now let’s hope these doctors will start to be a little more open-minded and constructive in their response to vitiligo. And, if some of them are slow to bring their attitude into line with current developments, perhaps patients themselves will at least be in a stronger position to educate them on the subject!
Healing skin by switching on our self-repair system
In part 1 of this blog I posed the question “could lack of #sleep be a factor in the development of certain chronic disorders, including #vitiligo?” and concluded that the answer is almost certainly yes. What prompted me to ask the question in the first place was a video that a vitiligo friend recently invited me to look at about vitamin D, deep sleep and gut bacteria (thanks for sending the link, Mira!).
Whilst I have blogged a few times in the past on the impact of both #vitamin-D deficiency and #digestive disorders in relation to vitiligo, I had never given much thought to the role of sleep in this context. If you had asked me – prior to seeing the video – how important I though it was for vitiligo sufferers to get a good night’s sleep, I would have said that it was no doubt very important for health in general, and possibly even more so for anyone with chronic health problems. But that would have been the extent of my insight into the topic. But once I listened to sleep expert Dr. Stasha Gominak describe her experiments and observations relating to the involvement of certain nutrients (especially vitamin D) and the communication that has to take place between the gut and the brain in order for therapeutic, deep sleep to occur, I began to appreciate that there is an awful lot more to the subject than I ever imagined.
We are designed to be completely self-healing
I began to wonder if sleep disorders might play a part, not only in the development of vitiligo, but also in its generally poor response to most treatments. In other words, I wondered if a lack of deep sleep might be one of the triggers for de-pigmentation and whether – if left untreated - it might also hamper all attempts at reversing the process. If this were in fact true, it could be very good news, since improving a vitiligo sufferer’s quality of sleep would then presumably both spontaneously improve their vitiligo and improve the effectiveness of vitiligo treatments simultaneously. According to Dr Gominak, we are indeed designed to be completely self-healing. (What a wonderful concept that is – I love it and I only wish that modern western medicine would open its mind to this view. I am sure that it would revolutionise our health systems and the health of entire populations.)
The link between poor sleep and chronic illnesses like vitiligo
During deep all kinds of fascinating things happen. Our muscles become paralysed – in effect, we shut down in order for repairs and maintenance to take place. Scientists involved in brain stem research have discovered that the neurochemical “on/off switch” for this state of paralysis, which is located in our brain stem, contains vitamin D receptors, which indicates that the presence of vitamin D is required before deep sleep can occur. So what does that mean for those of us with subnormal levels of vitamin D (that includes the typical vitiligo sufferer)? Well, Dr Gominak notes the strong correlation between the increase in vitamin D deficiency (mainly due to our modern indoor lifestyle) and the increase in sleep disorders. And she also points to the parallel increase in “modern” illnesses like Fibromyalgia, Chronic Fatigue, IBS and Coeliac (Celiac) Disease.
Her experience with her sleep disorder patients has shown that raising vitamin D levels in many cases significantly improves the quality of their sleep and the extent of their ability to self-repair, resulting in the reduction or complete elimination of a whole host of chronic symptoms. (She also goes on to explain the role of vitamin B supplementation, and of pantothenic acid in particular, in sustaining this recovery after the first couple of years, so I recommend watching the video if you want to understand the whole picture.)
Do you know how well (or otherwise) you sleep?
It is worth mentioning that many people with sleep disorders don’t realise they have one. You don’t even have to have a recognised sleep disorder to suffer from insufficient deep sleep. I have always thought of myself as someone who sleeps fairly well. But, now that I consider it carefully, one of my earliest memories is of regularly having difficulty getting to sleep as an infant in my cot because of stomach cramps (due, I now realise, to digestive issues). And there have been many times, as an adult, when I have suffered bouts of insomnia for the same reason – and sometimes for no apparent reason. Even when I get a full night’s sleep, I have no way of assessing the quality of that sleep. But the fact that I suffered with chronic fatigue for most of my life does make me wonder. I would imagine that long-term sleep disorders are one of the most likely causes of chronic fatigue, since they prevent the body from completing its re-calibrating and repairing routines each night. Interestingly, all of my symptoms improved – simultaneously with my re-pigmentation - after I adopted my nutritional protocol. So does that mean that my digestive problems were causing me to sleep poorly or that poor sleep was causing the digestive problems? And which of these (if it wasn’t both together) might have been a trigger for my vitiligo? In a sense, it doesn’t really matter which came first as long as the cure for both is the same. But it would still be interesting to know.
The relationship between sleep and vitiligo
I can find no research into the relationship between sleep and vitiligo specifically, although there is plenty of evidence to suggest that stress can trigger and aggravate the condition and there can be no doubt that lack of sleep increases stress levels. What is known is that sleep deprivation contributes to the development of chronic illness generally and this scientific paper points to possible links between sleep disorders and autoimmune diseases (of which vitiligo is considered to be one).
It would be helpful to know if there is a higher incidence of sleep disorders among vitiligo sufferers than the rest of the population (or indeed if there is a higher proportion of vitiligo cases amongst sleep disorder sufferers than might be expected). It would also be helpful to know if lack of quality sleep simply exacerbates the condition or if it is, in fact, part of the disease process itself. For example, might the faulty digestion and poor nutritional status experienced by so many vitiligo sufferers (which I believe to be a central cause of pigment loss) be due to certain critical, sleep-time processes simply not occurring? I don’t think anyone knows the answer to that question (and I’m not sure that anyone else has thought to ask it). But this blog might be an opportunity for readers to share their own experiences and perceptions on this subject.
So, please feel free to leave comments below about the quality of your sleep and whether or not you feel there is any connection with your vitiligo. Maybe, between us, we can shed a little more light on this fascinating topic, or - failing that - at least share some useful tips on how we might all improve our sleep.
I will keep an eye on incoming comments and respond where appropriate. But please forgive me if I sometimes reply belatedly. When it comes to blog comments, I tend to check them once a week rather than every day, so if I don't answer to specific questions straight away please don't think that you have caught me napping!
Night, night - sleep tight ;)
My name is Caroline.