I am not known for my short blogs. This is partly because I am quite a long-winded person (my husband often pleads with me to get to the point!). But it is mainly because #vitiligo is a complex subject. I find that it leads me down such fascinating and winding paths that I'm sure I risk losing some readers who may just be looking for quick snippets of information (or who may just need to go and get a hair cut!!) If you fall into that latter category you will be pleased to know that this week I shall be brief because I want to reach as many people as possible with a very simple message and to ask you to play your part.
A couple of days ago I received an email from Ogo Maduewesi, Founder and CEO of VITSAF, with a brilliant idea for raising #awareness. She proposed that we ask Google to mark World Vitiligo Day by devoting one of their famous Google Doodles to mark the date on June 25. Needless to say, this would be an incredibly powerful way of getting the word “vitiligo” in front of a huge chunk of the world's population on one day. It would encourage people to look it up, think about it, become better informed and find out what World Vitiligo Day is all about. It would be massively influential in changing perceptions and could even lead to increased funding and research and a cure sooner instead of later. Not least, it would give people with vitiligo everywhere a huge sense of encouragement and solidarity.
I can think of no better way to spread awareness
Roughly 1 in 100 people – men, women and children of all races and backgrounds – will develop vitiligo during their lifetime and for many the experience is socially and psychologically devastating. I can think of no other phenomenon indiscriminately affecting this proportion of the world's population that is so poorly understood, so under-researched, so under-funded and so under-publicised. And I can think of no better way to spread awareness about it than by getting behind this #campaign.
The beauty of it is that we can all help by doing something that will take us no more than 5 minutes. If you would like to see a World Vitiligo Day Google Doodle on June 25 please:
send an email to Ryan Germick at email@example.com
send a letter to:
Doodle Team Lead
1600 Amphitheatre Pkwy
Mountain View, CA 94043, USA
It can be as brief as you like: for example “Please create a Google Doodle for World Vitiligo Day on June 25. It would help raise awareness of this little-known skin condition that affects so many people around the world.” Or you can make it more personal and add your own perspective if you have time. The main thing is for us to get as many requests sent in as possible so we stand a chance of success.
Judging by this video, someone already had this idea but it never came to fruition . So let's all put our voices together and actually do-odle it!
Please like this post if you intend to send a request :)
The deeper I delve into the subject of #supplementation for #vitiligo (and general health, for that matter), the more aware I become that getting it right is a real balancing act. A lot of people mistakenly believe that eating a varied #diet provides enough good nutrition to maintain optimum health. This might have been true once upon a time, before our soil became badly depleted and when all farming was organic by default. But modern farming and food processing methods have robbed even our "healthy" foods of a lot of their goodness, meaning that supplementation has become essential for many of us, and even more so for those of us who suffer chronic illness.
vitiligo sufferers typically lack certain nutrients
The fact that vitiligo sufferers are typically lacking in certain nutrients is now generally accepted, as is the fact that supplementation can therefore help to restore normal pigmentation. Although most family doctors still never so much as mention nutrition to their vitiligo patients (which is a sad reflection on their lack of nutritional knowledge, in my opinion) I was encouraged to read the following information in the April 21, 2016 Recouleur blog which shows that some dermatologists and other well-informed medical practitioners do.
According to the blog, one such specialist is Dr. Pearl Grimes of the Vitiligo and Pigmentation Institute of Southern California (also a member of the Medical & Scientific Advisory Committee of Vitiligo Support International and the Medical Advisory Board of the American Vitiligo Research Foundation) who recommends vitamins, along with topical treatments and phototherapy, to her vitiligo patients.
In Argentina Dr. Leopoldo Montes, who has also served on the same Vitiligo committees as D Grimes, and holds a US patent for the Method and Composition of Treatment Vitiligo with vitamins, has conducted research over several decades into the use of vitamin therapy for vitiligo, culminating in the publication of his book Vitiligo: Current Knowledge and Nutritional Therapy.
Dr. Ben Kim (a chiropractor and acupuncturist in Toronto and a vitiligo sufferer himself) also advocates dietary and lifestyle changes including nutritional supplementation. And for every health care practitioner who - like the examples above - recognises the link between vitiligo and nutrition, there must be thousands, like me, whose own experiences have clearly demonstrated the connection.
I regained my lost skin colour
If you are familiar with my story you will know that I regained virtually all my lost skin colour several years ago, thanks to a combination of nutritional supplementation and moderate sun exposure. When I first tried the supplements, it was a case of “let's give it a go and see what happens”. So I really didn't give much thought to what all the individual ingredients were and how they work together in the body. That side of things had already been taken care of by the manufacturers. The two main supplements I used contained a specifically balanced ratio of vitamins, minerals, enzymes and phytonutrients.
Boost-ing pigment & fighting free radicals
The natural tanning capsules (Boost) were evidently formulated specifically to provide the skin with the right combination of nutrients for creating healthy pigment, so the nutritional composition of this product was obviously scientifically created with this as its main purpose. The super-green food (Five a Day+V which I believe to be so effective for vitiligo because it fights oxidative stress) is also a well balanced formulation, but in this case one created by nature as it is a blend of whole green foods, rather than a supplement in the usual sense. Because of their ready-made formulations, using these products has never required any guesswork or nutritional knowledge on my part. But, when it comes to other supplements (and my everyday food choices) I realise that – since there is no nutrition guru in a white coat looking over my shoulder - it is up to me to do my homework and try to achieve the right balance for optimum health for myself.
good health is a work in progress
Taking the supplements every day and coaxing the process along with regular bouts of sunshine has certainly worked dramatically well for me as a vitiligo protocol, ridding me of around 98% of my white patches over a period of a year or so and the improvement has so far been permanent.
Ecstatic though I am about this (and I really am – I never take my recovery for granted) I realise that keeping my vitiligo away and maintaining a good level of general health is, for me, always going to be a work in progress. It seems that a genetic predisposition to vitiligo, coupled with poor nutritional absorption, means that I will never be able to rely simply on eating a “healthy diet”. This is why I have become so interested in learning more about nutritional supplementation and why I continue to look for products that will create the best “internal environment” for my body as possible – and this is where the question of balance comes in.
So, in future posts (as in recent ones) I plan to revisit the important topic of nutritional balance. I hope that you will find these posts informative but, above all, I hope to be able to pass on, not just information, but better health, better skin and a better quality of life.
Takes more than a knee-jerk reaction
Today, we are probably better informed about diet, #nutrition and health than at any time in history, due, in the main, to modern media and the miracle of search engines. And yet (no doubt for the very same reasons) most of us have a tendency to oversimplify the subject. We gather so much of our knowledge about nutrition from headlines, advertisements and sound bites that we start to think in terms of one problem: one solution. For example, colds and flu? Take vitamin C. Indigestion? You need antacids. Weak bones and teeth? Take calcium, and so on.
Knee-jerk diagnoses like these can be like putting 2 and 2 together and making 22. It's all too easy to forget that the human body is a complex eco-system and that for every problem there is usually more than one solution. And, equally, every solution can usually address more than one problem. The examples above are a case in point. Whilst it is true that vitamin C does help protect against viruses, it is just one of numerous essential nutrients involved in supporting the immune system. Whilst we have been virtually brain-washed by the advertisers into believing that all indigestion is the result of excess stomach acid, a deficiency of stomach acid can cause identical symptoms and is actually thought to be far more common. And whilst most people instantly think of calcium as the one and only supplement for bone health, yet calcium intake does not help very much unless you also have adequate levels of vitamin D.
So, what am I saying? Well, what I am not saying is to avoid nutritional solutions. I am a firm believer in food as the best medicine. But what I am saying is that just because nutrition is natural does not mean that it is simple. Figuring out what is most likely to help your #vitiligo may well be complicated. Discovering what deficiencies you may have, how they are affecting your health and how to address them, can take a fair bit of detective work, in-depth reading and even, on occasion, a bit of trial and error.
For example, it was really only after writing last week's blog about vitamin D that I made a connection between a number of health problems I have had (in addition to vitiligo) that may also have resulted from my (typically for vitiligo sufferers) low levels of this vitamin. These include joint problems,fibromyalgia, chronic fatigue, allergies and a near miss with ovarian cancer. I realise that linking all these conditions together could be a classic case of knee-jerk diagnosis but there is no doubt that vitamin D deficiency (and other nutritional deficiencies) can cause a host of seemingly unrelated health issues.
Dr James Dowd, who works at the Arthritis Institute of Michigan, has been prescribing vitamin D to people suffering from chronic disorders such as arthritis, back pain and headaches and the result, he claims, is a huge improvement in their symptoms.
My own doctor recently voiced the opinion that the arthritis I developed as an adult in my hip might well have been avoided if the original abnormality in the joint had been spotted and corrected when I was an infant. I certainly don't blame anyone for not picking up on this at the time, given that screening for this sort of problem probably wasn't around then. But I do wonder how much better, as an adult, my health might have been if my vitamin D deficiency (also undiagnosed at the time) had been identified and corrected when I was very young. With that experience in mind, I have now added a D supplement for infants to the adult and junior products already available in Vitiligo Store because what I have learned since last week's post is that most babies are also low in vitamin D and require supplementation (especially those who are breast fed).
My approach to vitiligo, and other chronic conditions, is that addressing their root causes is almost always a better first option than treating the symptoms with drugs or surgery and that this can very often be done through nutrition. And the particular message I wanted to share with you this week is that it is worth becoming a student of nutrition (if only at the "University of Cyberspace"), thinking intelligently about your own health and diet, being willing to test your knowledge by trying different foods and supplements and being aware that finding the right vitiligo and general health solutions for you might take some detective work and avoiding over-simplistic knee-jerk assumptions.
Finally, it must be said that it is not just the layman, like myself, who can be guilty of making knee-jerk assumptions. The medical profession are infamous for doing exactly that in their response to vitiligo. Their reaction, too often, is “white patches? Vitiligo. There's no cure – stay out of the sun and don't worry about it.” Whilst I agree that worrying does not help, I know from personal experience that sun exposure definitely can. And I know that reading, learning, reasoning and being proactive in taking responsibility for your own health definitely pays big dividends.
More crucial than I realised
In last week's blog I was full of the joys of spring and looking forward to sunnier weather ahead (I live in hope). This week continued thoughts of sunshine have led me back to a subject I explored exactly a year ago: #vitamin-D, the “sunshine vitamin”, so called because exposure of bare skin to UVB rays is one of only two principal ways of topping up this essential vitamin (the other way being #supplementation).
In the first of two blog posts on the subject last April I described how my doctor had recommended I sit in the sunshine for 20 minutes a day to top up my depleted vitamin D levels. This was one of the pleasantest prescriptions I have ever had, although an all-expenses-paid trip to Mauritius would have been even better. This was the first and only time any conventional medical practitioner has ever even mentioned vitamins to me and I have always had the distinct impression that nutrition hardly features at all in modern medical training. However, vitamin D deficiency has been implicated in an ever-growing list of diseases that are putting an increasing strain on the health system, which may explain why it seems to be one nutrient that is taken seriously by doctors. And this is not surprising when you consider the unique status of vitamin D: it is not just a vitamin, but also a neuro-regulatory, steroidal hormone that influences nearly 3,000 of the 25,000 different genes in the body.
Alarmingly, most of the population is thought to be deficient in vitamin D because they do not have enough sun exposure, whether due to lifestyle or climate (or even over-use of sun protection products), and should be taking vitamin D supplements since it is not possible to get enough from diet alone. #Vitiligo sufferers generally have an even greater deficiency of vitamin D than the general population and low levels are also observed in patients with other inflammatory and autoimmune conditions. So my conclusion was that supplementation is even more important for those of us with a predisposition to vitiligo and autoimmunity.
What I didn't fully understand a year ago, when I was researching this topic, was that the significance of vitamin D to vitiligo goes beyond the fact that deficiency has been linked to this and to other autoimmune conditions. It goes beyond the fact that it acts as a powerful antioxidant combating the oxidative stress that is known to play a part in the depigmentation process. In fact, vitamin D has such a pivotal role in the tanning process that if it is not present in the skin it becomes impossible for calcium to perform its function of regulating the skin's pigmentation cells.
This scientific paper Vitamin D and the skin: Focus on a complex relationship: A review contains a section about vitiligo (you will need to scroll about a third of the way down the page) which states:
Vitamin D protects the epidermal melanin unit and restores melanocyte integrity via several mechanisms including controlling the activation, proliferation, migration of melanocytes and pigmentation pathways by modulating T cell activation, which is apparently correlated with melanocyte disappearance in vitiligo.
The authors go on to describe the various ways in which vitamin D is believed to provide protection against vitiligo, although these are not yet fully understood and their implications for a vitiligo cure are still not yet completely clear.
The science behind this topic is obviously very complex and still being researched. But what is clear to me at this point is that vitamin D supplementation has to be highly recommended for anyone with vitiligo and that, whilst supplementation may or may not restore lost pigment on its own, allowing a vitamin D deficiency to continue seems like a sure way to make your vitiligo – and your general health – much worse.
The supplements I used to repigment my vitiligo contain vitamin D as part of a broader formulation but not in the amounts necessary to correct a specific vitamin D deficiency, so I have added some vitamin D supplements to Vitiligo Store which I can personally recommend. One is in tablet form and is works out incredibly inexpensive to use since one bottle has enough tablets to last a year. The other comes in both adult and children's formulations and is a spray. Although this second option costs a little more per dose than the tablets, it offers a perfect solution for anyone with digestive problems. Because the vitamin D is sprayed under the tongue and absorbed straight into the blood stream it by-passes the digestive system so none is lost through malabsorption and there is no risk of side effects (constipation being one that some people report when taking vitamin D orally). It also provides an option for children.
or does spring bring new hope?
March is over. The long Easter weekend is already a memory. Here in the UK we have put our clocks forward an hour, since we no longer need that vital extra hour in the mornings to let the sun struggle high enough to get us out of bed. The first blossom is starting to appear on the trees, daffodils are blooming in glowing profusion and images of long, sunny days and lazy, warm evenings are already taking shape in my imagination. (Of course, this being northern Britain, that is where they may well stay but there is no harm in being optimistic.) I can feel a growing sense of impatience for spring to get under way in earnest and for summer to appear on the shimmering horizon in all her golden glory.
But, before I get too carried away with poetic fervour, I have to remind myself that I have not always looked forward to warm weather as I do now. The very prospect of summer and all it entails used to fill me with anxiety and despondency because I knew that I was about to have most of my coping strategies stretched to breaking point on a daily basis. I knew that, for the coming several months, I would be forced to confront the “thing” that I had been reasonably successful in pushing to the back of my mind all winter long. I would no longer have the reassurance of long sleeves, opaque tights, high necks and scarves. I would soon be flushed out from behind the relative safety of grey days and artificially lit evenings into the unforgiving clarity of the sun, making it that much harder to make my patchy skin appear normal. Not only that, but I knew the hours I would have to spend painstakingly painting out my intricately patterned #vitiligo patches with self-tan. I knew that this exercise would require me to focus all of my concentration on the very condition I so much wanted to forget. And I knew that if, God forbid, the weather was hot enough to make me perspire all that effort would be undone in no time and my face and body (not to mention my clothes) would all end up various mottled shades of white, brown and orange. All these considerations – and many more that vitiligo sufferers the world over will instantly recognise – meant that the very season most people greet with such enthusiasm was the most depressing one of all for me, daffodils or no daffodils.
I can remember how much I loved warm weather when I was a little girl, long before I knew what the little penny-sized area of white skin on my ankle bone would eventually lead to. I was a real Tomboy back then and spent the seemingly endless, sunny days of childhood either in my brother's hand-me-down cotton shorts and T-shirts, climbing trees with the rest of the gang, in a swim suit digging sand castles on the beach or daintily dressed in cool, floral-print frocks and sandals with my hair tied up in a pony tail. Like most children, I loved the feeling of freedom that being in the open air and wearing the lightest of clothes brings. And by the end of the summer the only effect of that small ankle patch was to show off how bronzed the rest of me had become.
As my vitiligo spread in later childhood and into adulthood I often looked back wistfully on those carefree summers and envied my younger self. I also had to try hard not to feel jealous of all the people around me whose enjoyment of the season had remained undiminished and whose perfect skin seemed to look healthier and more beautiful, the hotter the sun became, whilst mine did the complete opposite. I can't honestly say that I always succeeded in keeping that envy at bay but most of the time I simply hid my negative feelings and turned them inward, which was probably just as destructive. I do wish now that I had known my vitiligo would not be a life sentence (which is how it felt). I think that, if I had known I would regain virtually all my lost skin colour later in life and that I would, once again, view summer as a relaxing and happy season I might have coped better psychologically because I would not have felt so hopeless.
I realise that many people with vitiligo today have a much more constructive attitude towards it than I did. They don't obsess over it and they don't let it spoil their fun, whatever the time of year. As it is, I am just very grateful to have been given a second chance to enjoy the simple pleasures that this time of year promises without the mental baggage that used to come along with it. And, thrilled as I am to be rid of my white patches, I don't regret any of my experiences. I can honestly say that I don't wish I had never had vitiligo because I think it taught me compassion. I do wish there was no such thing as vitiligo because then no one would have it! But, given that it does exist, I know that it has ultimately made me a stronger, more empathetic and more appreciative person than I would otherwise have been. And, all things considered, I think that those characteristics are far more important to me – and, I hope to others I come into contact with - than having perfect skin :)
My name is Caroline.