Just like many other medical conditions, #vitiligo shows no favouritism. It affects all ethnicities, old and young, rich and poor, male and female alike. It takes no account of whether or not you are a famous or a good person, whether or not you deserve to have additional problems in your life. And it certainly doesn't care whether or not you feel sorry for yourself – which, if we are honest, we all do from time to time. It’s just one of those things that happens to some people and, depending on your personality and attitude to life, it can either be (multiple choice coming up...you choose the description that best fits you):
Whatever category above you fall into, I am guessing there isn’t a single one of us that hasn’t ever, at least once, asked the question “why me?” So I would like to suggest 3 answers that I hope will help.
The first answer to this question should really be, “why not me?” The question is, after all, a pointless one. In fact, it is entirely the wrong question. It assumes that fate chose to afflict the wrong victim. It suggests that I would prefer someone else to have been cursed with unwanted, unexplained white patches all over their skin. Or, even more nonsensically, it suggests that I might have preferred to have cancer or been paralysed in a traffic accident. It implies that suffering is fine – as long as it happens to someone else! Well, suffering is not fine, no matter who is doing the suffering. But, sadly, it is a fact of life. Most of the time, when we ask ourselves (or fate, or God) “why me?”, we know deep down that we are just feeling sorry for ourselves (which is OK, by the way – at least, it is human). The main trouble with the question, though, is that we are powerless to answer it. And every time we ask it seems to reinforce that powerlessness.
So, my second answer to the question "why me?" is that we should ditch that question for now and ask a different one - one that we have the power to answer. I have come to realise that the most empowering question a person with vitiligo (or any other affliction or adversity, come to that) can ask is "what can I do about it?" And the answer to that question is - "a lot!".
The sad thing is that comparatively few vitiligo sufferers are aware of just how much they can do to reverse their #de-pigmentation and revolutionise their health and happiness. And it's no wonder when you consider how little accurate information is available, not to mention the misinformation that often comes at us, intentionally, from unscrupulous con-merchants and, unwittingly, from well-intentioned but ill-informed doctors.
For nearly 5 decades I believed what I had been told. I believed that vitiligo was a life sentence, that it was a waste of time trying to treat it and that it would only ever get worse. It's no wonder that this prospect caused me to feel sorry for myself from time to time. I am sure I would have continued to believe these things if I had not, more or less accidentally, becomeliving proof that they were all utterly incorrect. If you have read my story of vitiligo re-pigmentation you will know that a somewhat half-hearted experiment with nutritional supplementation and sun exposure seven years ago unexpectedly and wonderfully reversed vitually all of the 80% pigment loss I had suffered by that point in my life. It is too early to say categorically that this recovery is permanent of course because only seven years have passed since then. But I take the fact that I have had no relapse and have only continued improving since then as a good sign :)
In the previous section of this blog I recommended ditching the original question because it was not one we have the power to answer and because it generally encourages self pity. However, there are times when the question “why me?” can be a valid one to ask and actually does have a meaningful answer.
Once I knew, from personal experience, that vitiligo was not the hopeless condition I once thought it was, I finally felt able to return to that initial question but to ask it in a completely different way - a way that led me to an empowering and uplifting third answer. And that answer to "why me?" is: “so that I can empathise with others who are going through what I went through”. Whether you think about it logically - or emotionally - there can really only ever be one helpful answer to the question “why do apparently random bad things happen to certain people”. And that is so they can overcome them and also help other people do the same.
This third answer was the primary motivation for starting my vitiligo blog soon after my re-pigmentation and is the reason I now spend so much of my time learning about what made it happen, reading up on research and corresponding with vitiligo friends. It’s not that I set out with any master plan to provide vitiligo support to others or to become any kind of information source on the subject. It has just naturally developed out of my extreme excitement and gratitude at having recovered to such an amazing extent. And, it has to be said, that this was fuelled by frustration (at times, to the point of anger) that so few genuinely helpful and accurate facts are available to people living with vitiligo to help them ask the right questions and to find the answers that do exist but that are still not common knowledge.
as effective therapy for vitiligo
There was a time when any #vitiligo patient who dared mention the word “vitamin” in the presence of their doctor would have earned themselves a patronising smirk and a dismissive assertion that “no evidence exists to show #nutritional-supplementation has any effect on the condition whatsoever”. Sadly, that time is not yet firmly in the past. But I fervently hope, and believe, that an excellent new publication called “The Use of Vitamin Therapy for the Treatment of Vitiligo” will help to consign this kind of reaction to history.
The woeful ignorance of most mainstream doctors on the subject of nutritional therapy for vitiligo was clearly a key motivation for the book's author, Audrey VanStockum @Recouleur. As she explains in her preface, she suffered with vitiligo and psoriasis for years, was misdiagnosed for both conditions and visited a total of 23 clinicians over a 14 year period in her search for answers to her skin problems. She realised that her negative experience highlighted “a paucity of information and specialized training” and it puzzled her that so few healthcare providers seemed to have any knowledge of effective vitiligo treatments, even though published research on the subject - dating as far back as 1945 - was openly available. Her frustration at this state of affairs led her to start doing her own research into the subject of nutritional therapy, trying various vitamin and mineral supplements herself and observing her responses. Her wide reading on the subject and experiments in self-treatment resulted in some re-pigmentation and, ultimately to the creation of her own dietary supplement called Recouleur.
Audrey's expertise in the area of nutritional therapy is a wonderful example of how frustration can sometimes be the mother of invention. The idea that we need to take responsibility for our own vitiligo treatment is a familiar one for many of us because we too have repeatedly met the same brick walls when trying to find constructive help from the medical community. Like Audrey, some of us will have wondered why our doctors have apparently never come across any of the research that we ourselves may have seen whilst trawling the internet for solutions and why it is that they are so resistant to the suggestion that nutritional therapy should be prescribed for vitiligo. In fact, I have sometimes advised vitiligo friends to avoid the subject of food and supplementation completely when visiting their doctor because I could predict the likely reaction and did not want anyone to rain on their parade. My view was that the proof of the pudding was in the re-pigmentation that people were achieving through supplementation and that trying to persuade the medical profession to recognise these successes was futile. But that was because it was not a straightforward matter to have the relevant research at one's fingertips during the typical doctor-patient consultation. Well, that was before Audrey's new publication, which – in addition to its main aim of informing vitiligo sufferers themselves - could also easily be used as a way of presenting their doctors with the nutritional facts, all in one well researched and clearly written 40-page booklet.
One of the strengths of “The Use of Vitamin Therapy for the treatment of Vitiligo” is, in my opinion, the fact that it strikes the perfect balance between scientific detail and simple explanation so that it makes suitable reading for anyone, regardless of whether they have a scientific background or not – and regardless of their prior understanding of vitiligo. The author assumes nil knowledge of the subject, explaining what vitiligo is and the processes thought to be involved in its development. She then reviews key vitamins and minerals used by the body to produce skin pigment and describes the role played by each one, as well as the adverse effects of deficiencies. And, crucially, she backs up all of the information with relevant research studies. As I read through the book, I found references that I had not come across before, as well as some that I had seen but had since lost sight of in the vastness of the internet. So, it was extremely useful to have such a comprehensive overview of the subject and its associated literature all in one place and set out in such a clear and concise way.
I also found myself saying (aloud) “YES!!!” when I read the chapter on what Audrey has termed “The Three-Prong Approach” to vitiligo treatment because her view on this makes total sense and resonates with my own thoughts exactly. This approach states that that the most effective vitiligo therapies involve one component from each of the following categories:
In this way, the condition is being addressed from the inside out as well as the outside in and is benefiting from UV exposure (nature's way of stimulating pigment) as well as active, therapeutic ingredients (to treat the condition).
In my experience, most doctors only ever try to treat vitiligo “from the outside in” (i.e. they might use one, or both, of categories 2 and 3). Many do not even advocate any treatment at all because they claim that improvements are minimal and, at best, temporary. However, I am convinced that this is because they omit category number 1. They neglect to include nutritional therapy in their treatments. It stands to reason that external therapies may help treat skin symptoms but only internal ones can hope to address the root cause and prevent symptoms from recurring over the longer term.
The medical profession has been slow to pick up on the findings of research done as long ago as the 1930s and 1940s that clearly pointed to digestive deficiencies as being at the root of vitiligo. Audrey VanStockum draws on the findings of this research, further supported by anecdotal evidence of vitiligo sufferers whose pigmentation improved with improvements to their diet.
There is no question in my mind that correct nutritional #therapy can reverse vitiligo. Audrey and countless others (including myself) are living proof of the fact. But our modern health systems are heavily biased toward pharmaceutical and surgical solutions, no doubt because these are the areas of research that tend to receive the most funding. Concepts of healthy eating and nutritional supplementation as a means of restoring health receive very little serious attention and therefore do not produce the amounts of clinical research data demanded nowadays by the medical establishment. This is frustrating but perhaps it is understandable. Sophisticated drugs, stem-cell therapies and ground-breaking surgical procedures are needed for all kinds of life-threatening conditions that afflict the human race and they are super-expensive to develop. So this is where the funding tends to go. (And, if we want to be cynical about it, these are the treatments that can be patented and become lucrative for thedrug companies and professionals who administer them. Whereas foods and nutritional supplements already exist and are widely available.) What is lacking is not simply new clinical data to support nutritional therapies but an awareness and acknowledgement on the part of doctors that this approach is sometimes the most effective way of treating certain conditions, and that one of those conditions is vitiligo. And, to be fair, there is another requirement, if things are going to change: and that is individual patient responsibility not to be over-reliant for their own state of health on the men and women in white coats. We need to take charge of our own recovery.
In the final paragraphs of the book, Audrey puts all of this in a nutshell: she says, “First, patients need to be their own health advocates and seek solutions for treatable conditions instead of accepting any answers physicians provide, such as “Nothing can be done,” which is said all too frequently to vitiligo patients. Second, physicians need to be open to complementary therapies for treating highly challenging diseases that do not always respond to conventional treatments. Third, more robust studies are needed to analyze the role of vitamins in treating vitiligo; and fourth, dermatological residencies should include a tract on the role of nutrition.”
Obviously, there is far too much detailed information in this excellent publication for me to do more than scrape the surface in this blog. So, I would recommend it as essential reading for anyone, from any background (scientific or not) who wants to understand the relationship between nutrition and vitiligo and how nutritional therapy can help to treat this complex and frustrating condition.
Congratulations, Audrey - and thank you for sharing your knowledge!
My name is Caroline.