Part 3: Weird to some is wonderful to others!
Most #vitiligo sufferers are the object of #curiosity at some time in their lives. Many are content to let their white patches show and would not consider themselves to be “sufferers” at all. Thanks to a greater awareness of the condition and improved levels of support and solidarity among the vitiligo community online, this appears to be a growing trend, and a very positive one in my opinion. But I must confess that I always belonged to that other – and probably larger – group of individuals affected by vitiligo who preferred to keep my skin condition completely private. For most of the 50 or so years that I had widespread vitiligo I was remarkably successful at hiding the fact. But, despite my best efforts, there were occasions when I attracted the attention of others and had to field the inevitable comments and questions that followed. “What happened to your hands?”, “Did you know that you have some white eyelashes?” “Have you burned yourself?”, etc., etc. I am sure that these sorts of questions – and the stares that generally accompany them – will be familiar to many of you reading this blog.
If it's any consolation, it seems you don't have to have anything as out of the ordinary as two-tone skin to elicit unwanted comments, as this blogger with pale skin discovered. (I love her reaction to the woman on the beach!) It goes to show that you can have the most beautiful, smooth skin tone and still not live up to others' expectations of how “normal” skin should look. What is rather shocking is the fact that people feel justified in commenting at all and that they don't seem to consider that it can cause offence.
If having irregular #whitepatches (or even just a #fairskin) is enough to prompt remarks from strangers that – let's face it – in only marginally different circumstances would be considered racist and completely unacceptable, then spare a thought for those who live with less common pigmentary conditions. One such condition is called Cutaneous Mosaicism which, as the name suggests, causes the skin to have mosaic-like patterns of pigmentation. This genetic disorder occurs when the skin cells within the same individual have different genetic makeup: in other words, when two or more genetically different populations of cells exist side by side within a person's skin. The two cell lines develop very early in the life of the embryo, resulting in one of several different pigmentary patterns. (Types of #Mosaicism also occur in animals where they are a much more familiar sight.)
The various patterns are known as:
Type 1: Blaschko's lines (divided into narrow or broad bands)
Type 2: Checkerboard pattern
Type 3: Phylloid (leaf-like) pattern
Type 4: Large patches (congenital melanocytic naevi)
Type 5: Lateralisation (CHILD syndrome)
The picture above is an example of Blaschko's Lines Mosaicism. These lines are believed to trace the migration of embryonic cells and, whilst invisible under normal conditions, are revealed in the presence of certain skin conditions. (Various documents suggest that segmental vitiligo may be one of these.)
Reading around this whole subject over the last few days has made me realise just how many processes have to happen without a hitch from the very moment a baby is conceived in order for it to have the perfectly smooth and flawless skin that most people regard as the norm. This reminds me of how unique and miraculous each human being is and it also makes me wonder why it is that we, as a species, find it so hard to accept unusual markings and colours on other humans and yet we appreciate their beauty when we see them elsewhere in the animal kingdom.
Part 2: Melanin is not the only pigment
This week, I have unearthed a fascinating article on the subject of #Skin Colour. But first, I would like to ask you to bear with me while I set the scene...
One of the marvels of humankind is that fact that we all have so much in common and yet we are each unique in personality and #appearance. I imagine that if aliens were to visit planet Earth, they would probably think we all look pretty much alike. But when we look at each other our differences are very apparent and they are essential to our ability to recognise each other and to the way in which we interact and socialise.
Our differences – and our similarities – are often what attract us to another person (or sometimes they have the opposite effect!). The most important thing about each of us, of course, is who we are on the inside. The rest is just packaging. But, as a species, we are strongly influenced by external appearance – nature dictates that we should be this way during our reproductive years at least – and this preoccupation with how other people look is part and parcel of the process by which our diverse physical characteristics (including skin colour) are either perpetuated or modified from one generation to the next.
When you stop and think about it, this all seems obvious: we tend to choose a partner based partly on their outward appearance. This can be at a conscious level: we might think to ourselves “that person is just my type because he or she has a certain colour hair, skin or eyes or a particular physique”. But a lot of the process of attraction is instinctive. Anthropologists and psychologists would probably be able to analyse what is taking place and describe it in terms of genetics or evolutionary science. But, to most of us, it is just a gut feeling which – alongside our response to the other's personality – can create a strong attraction, or even that thing called love, that is hard to put into words without bursting into song!
Skin colour is one part of this equation but it seems that there is more going on in this respect than meets the eye. Whilst I was collecting interesting links for this #vitiligoBlog I stumbled on a rather quirky piece of research and thought that it was worth sharing, if only because those of us with vitiligo can become so fixated on our defective #melanin that we forget it is not the only skin pigment and - if this research is to be believed – it is not even the most attractive one!
Melanin is the brown pigment responsible for how light or dark an individual's colouring is and is the pigment involved in the tanning process. But there are also carotenoid pigments present in every layer of human skin which determine how much yellow a person's skin tone has. It is this carotenoid pigment that is the subject of the research.
The paper suggests that levels of this pigment in our skin have a powerful impact on how attractive others find us. It suggests that we are attracted to people with high levels of this antioxidant-rich yellow pigment in their skin because, at a subconscious level, we recognise it as an indicator of good health and therefore, presumably, suitability as a potential mate. (I shall never listen to the lyrics of Coldplay's "Yellow" in quite the same way again!) The article then goes on to reason that if this is so, the fact might provide a persuasive argument in encouraging people to eat more carotenoid-rich foods in their diet.
My main reason for mentioning the article in this blog is simply that I find it intriguing. But I also think it is significant in the context of vitiligo because it adds another dimension to the we-should-all-eat-more-fruit-and-veg argument. It suggests that carotenoids, rather than melanin, may be the key skin pigment when it comes to having attractive skin. And this is good news for two reasons. Firstly, all of us can enjoy the cosmetic benefits of increasing carotenoid levels in our skin, whether we have vitiligo or not, since carotenoids are unaffected by vitiligo. (For example, I eat a lot of vegetables anyway but I also take a carotenoid supplement specifically for its natural bronzing effect, something I started doing because it slightly lessened the contrast between my white patches and my natural skin colour and then continued to take it after I repigmented because I find it gives my whole skin a healthier colour.) And secondly, the more antioxidant-rich plant foods we eat the more we are protecting ourselves from the free radical damage that is known to characterise the development of vitiligo. So, the bottom line seems to be that by increasing our consumption of vegetables and fruit we not only give our body the best chance of healing itself but we will also look and feel healthier and more attractive while we are doing it!
Could this explain why most smiley faces are yellow?
Part 1: how transparent are you?
It's a pleasantly warm July morning here in the north of England (yes, we really do get them sometimes) but there is still some hazy cloud cover so I am doing what I often do when I am at home at this time of the year and it's not sunny enough to work on my tan. I'm deep in blog research mode.
Sometimes I have a very clear idea of what I want to write about and other times – like today – I just see where google takes me. I currently have no less than eighteen tabs open on my browser because I keep jumping from one fascinating subject to another and back again. And, as I do so, my topic for this week slowly starts to reveal itself, dare I say, like a new patch of #vitiligo emerging gradually from the surrounding skin until it is fully formed!
I have written before about how amazingly diverse human skin colours and types are and about some of the many factors that influence this #diversity.
But it is a massive subject and today I find myself ricocheting off it in several intriguing directions at once (hence the many tabs). So, as I have no wish to confuse you, or myself, by tackling all of them at once, I will explore each topic separately over the next few weeks.
I shall have no difficulty in making part 1 of this series very clear – literally – because it is all about #transparency. I never used to think in terms of skin being either transparent or opaque. My professional background is in image consultancy and colour analysis, so the uniqueness of each individual's colouring has always interested me. But I had been taught to think in terms of depth, clarity and undertone, i.e. whether a person's colouring was deep, light, bright, muted, warm or cool. How #opaque their skin was didn't really come into it (although I think some colour analysts nowadays do take this into account when advising their clients on clothing and makeup).
What set me off thinking about the transparency, or otherwise, of skin was seeing this amazing picture of a newly discovered species of “Glass Frog” from Central America.
Being able to see its internal organs through the skin is a very visual reminder of the fact that skin is the living packaging that keeps our insides in and the external world out. And, whilst no human on earth (as far as I know) has such remarkable see-through packaging as this little Costa Rican creature, it is certainly true to say that human skin can also vary considerably in translucency. The best way I can describe it is to say that some people's skin looks like a delicate water colour whereas others' is more like an oil painting.
This seems to be true of all races although, in general, the darker the skin the more opaque it is likely to be. Some very fair-skinned white people have such a delicate skin that their veins are visible through it, whilst others are just as fair but completely opaque and this can also be the case with black and Asian skin tones: some have a sheer luminosity behind them and others are more “solid”. Some people with translucent skin are bothered by how “thin” their skin looks but, personally, I find all combinations of skin colour and opacity equally beautiful.
What is a bit weirder though is when a person has both types of skin at once, which is what can happen if you have vitiligo. Over the years, as my vitiligo developed, I noticed that the white patches were the water colour (i.e. translucent) and the normal skin was the oil paint (since my normal skin tone is quite opaque). This was especially apparent when I tried to camouflage the depigmented areas. I noticed that the depth and tone of the camouflage were not the only characteristics to be considered in choosing a suitable product. It also had to have the right texture in order to add opacity to the translucent vitiligo patch.
Oprah Winfrey's description of Michael Jackson's appearance is an example of the way in which a lack of pigment increases the transparency of a person's skin. She says, "Anybody who knew Michael Jackson will tell you that when you are up close to him—he had absolutely no pigmentation in his skin—you are looking at his veins when you look at his hand. You are seeing through to the blue veins, and they’re very, very apparent... You’re looking at a person who is almost translucent.”
My gradual repigmentation over the past few years has been even more interesting in this respect than the original depigmentation process because of all the varied levels of opacity I have observed on the patches as they regained their colour. In particular, the blue veins on my feet and hands, inner wrists and underside of my arms had been very conspicuous when they lost their colour. It was a bit like looking at seaweed from a glass bottom boat!
But, when the pigment started to come back, it did so in two completely different ways. Some of it returned as opaque freckles on the still translucent background, almost like barnacles on the boat's window. But in other areas the whole vitiligo patch gradually turned from translucent to more opaque, as if the boat had stirred up the sandy seabed creating a murky wash of colour. On the whole, these latter areas have a more even tone than the freckled ones because I didn't have to wait for them to join up. However, the non-freckled patches of #repigmentation have been slower to regain their opacity and some of them (mainly on my hands and feet) have remained a little lighter than the rest of my skin, though still flesh-coloured as opposed to white.
The freckled variety of repigmentation is well documented and can be split into three categories: perifollicular, where tiny dots of pigment form at the site of the hair follicles; marginal, where it forms at the outer borders of the vitiligo patches; and diffuse, where it occurs in freckles across the entire lesion. Whilst most of mine has been diffuse, I cannot find a description for the gradual reappearance of uniform skin colour that I experienced on some areas of my body, so I have no idea whether this kind of repigmentation even has a name.
If anyone else has similar experiences of various styles of repigmentation I'd love to hear from you. Meanwhile, I'll be back next week with part 2 of my Weird and Wonderful World of Skin Colour!
So many variables, so little money!
I sometimes wonder whether those of us who are afflicted with #vitiligo (an estimated one in 100 of the world's population) are justified in feeling frustrated about the lack of progress towards a permanent solution. As far as anyone knows, vitiligo has been around for as long as the human race and yet no remotely reliable #cure has been found in all that time. How can this possibly be? Well, justified or not, I certainly think a sense of frustration is understandable. After all, most of us – at some time or other - will have uttered the words “Isn't it wonderful what they can do nowadays!” The fact is that science and technology have advanced to a point where we actually expect the miraculous. After all, brain surgery, organ transplantation and sex changes are routine and cloning and genetic engineering are no longer science fiction but very much science fact. So, how hard can it be to find out what it is that causes a person's skin to turn white in patches and fix it? Apparently, the answer is “harder than you would think!”
Progress is being made behind the scenes. Inch by inch, researchers are making new discoveries about pigment loss (leukoderma) and vitiligo. Theories as to likely causes have evolved and successive, potential treatments have been pronounced “promising”. But, so far, most of the therapies that have emerged fall into the categories of traditional (e.g. herbal or nutritional), conventional (e.g. phototherapy and topical creams) or experimental, when what vitiligo sufferers the world over are waiting for is a brand new category: definitive. And the best that can be said about any of the existing treatments is that they all seem to work for some of the people, to some extent, some of the time. So, why is a universal cure so tantalisingly elusive?
The answer, it seems to me, is that – much like cancer research - there are so many variables involved that the task is not one of finding a single solution to a simple problem, but rather looking for several million solutions to several million different permutations of the problem. (Unfortunately, unlike cancer research, it is not well funded, so progress is that much slower.)
To give just a flavour of what I mean, the sum of all the available knowledge I can find to date on the subject of what causes vitiligo points to the likelihood that genetics are partly involved (i.e. people who have certain mutations to certain genes are more likely to develop vitiligo) but that any one or more of a number of different triggers may then also be involved in prompting the skin to start losing its colour. These include chemical or environmental sensitivities, allergies, hormonal imbalances, digestive problems, physical trauma and even mental stress. Not only are the triggers many and varied but so, it seems, are the #genetics that make some people more susceptible to these triggers than others.
Like many vitiligo sufferers, I was encouraged when researchers back in 2010
identified a gene mutation that increases the risk of vitiligo (and, interestingly, decreases the risk of skin cancer) and again in 2013 when the a genetically modified protein was heralded as a possible cure for vitiligo (and grey hair!). But, it turns out that there are in fact over 30 genetic variations occurring in different combinations that are associated with a greater risk of developing vitiligo. I have no doubt whatsoever that scientists are getting closer to success in their hunt for a cure. But it seems likely that these strides forward could be compared to glimpsing one lion in the long grass. Coming up with the universal cure for the condition could well be more like rounding up the whole pride.
... or for your vitiligo
Following my recent post about the effects of #phenols on vitiligo, in which I was reminded that a little learning can be a dangerous thing, I found myself googling around a subject that I thought I already understood pretty well: #antioxidants. And, as it turns out, these much talked-about compounds are not quite as straightforward as I had previously thought.
We are used to thinking of antioxidants in terms of the beneficial nutrients found in many fruits and vegetables that help to ward off chronic disease by keeping harmful free radicals in check. Those of us with #vitiligo are probably even more aware than most of the benefits of antioxidants because of the fact that scientists now know that vitiliginous skin is significantly lacking in antioxidant protection as compared to normal skin – hence the raised levels of hydrogen peroxide observed in vitiligo sufferers which is thought to be responsible for the “bleaching” of pigment from the skin. What I didn't fully appreciate though was that the label “antioxidant”, much like the label “phenol”, can refer to all sorts of synthetic chemicals that aren't always good for you and can be particularly harmful to anyone wanting to repigment their vitiligo patches.
Please don't stop reading at this point though! I would hate to be responsible for anyone ditching their healthy eating habits or throwing away their natural antioxidant supplements as a result of my last statement. The harmful antioxidants I am referring to are not the nutritional variety but the sort frequently used in industrial processing and present in all sorts of everyday items that most of us use without giving them a second thought. One of these is #monobenzone (a.k.a monobenzyl ether of hydroquinone or MBEH). This chemical compound, used as an antioxidant in the production of rubber, as well as in the manufacture of photographic dyes and in the dying of fibres, is also classified as a phenol (4-(Benzyloxy)phenol) and poses a variety of general health risks and a particular risk to anyone with a predisposition to vitiligo because it actually causes the skin to depigment. In fact, many vitiligo sufferers will know of monobenzone under the name Benoquin, available in the form of a topical cream sometimes prescribed to those who wish to achieve a more uniform skin tone by completely and permanently depigmenting. So monobenzone is definitely not something any of us would want to come into contact with unless we were deliberately using it to remove the colour from our skin (a drastic solution that I would not recommend anyone take without very serious thought and professional medical advice). And yet, its presence in protective rubber gloves in the late 1930's early 1940's was what first alerted occupational dermatologists to its pigment-destroying properties.
Reading about this prompted me to try to find out whether or not the most popular brands of household rubber gloves available today also contain monobenzone. If so, it could go some way to explaining why so many people find it more difficult to repigment their hands than the rest of their body. But, whilst there is plenty of information on the internet about latex allergy (apparently 6% of the UK population suffers from this) and how this risk can be avoided by using alternative products like nitrile gloves, I can't find anything to tell me specifically which brands of rubber gloves (be they natural, synthetic, latex or nitrile) do or don't contain monobenzone or any other harmful chemicals. However, everything I have read certainly suggests that these very items we put on our hands to protect them from harmful chemicals may actually be doing far more harm then good. It's certainly the case that wearing rubber gloves for too long has always left my skin feeling prickly and itchy and it does not surprise me in the least that rubber gloves are included on the Vitiligo Society's list of possible triggers for vitiligo.
[Postscript to this topic: I have since sourced two excellent ranges of dermatological protective gloves and clothing, DermaSilk and Microair Barrier, which are both available to order on Vitiligo Store.]
My name is Caroline.