It has taken me more than half a lifetime of dealing with the day-to-day impact of living with vitiligo and wondering "why me?" (when all along I knew the answer was "why not me?") to realise that the experience has made me a much more compassionate human being. Even though my pigment has been steadily returning over the last few years and my own personal cloud (which is how it often felt) has lifted, this silver lining has remained and I know it's one I share with so many others who know what it feels like to be different. I now appreciate my pigment more than I ever did before I started losing it and I appreciate the gift of compassion even more than the return of my natural colour. My vitiligo friends, you are among the most compassionate people I have ever known. Like clouds, your white patches may come and hopefully, like mine, they will go but they have silver linings that leave you richer than you would ever have been without them :)
It seems that press rumours of a cure for age-related greying of the hair were somewhat exaggerated. However, the research that triggered them is still good news for anyone with vitiigo.
It doesn't take much googling on the subject of vitiligo research to find mounting evidence that vitiligo sufferers have increased levels of hydrogen peroxide in their skin. A person in normal health is able to break hydrogen peroxide down into water and oxygen, thanks to a naturally occurring enzyme called catalase. But for some reason people with vitiligo produce insufficient levels of catalase to combat the bleaching effects of hydrogen peroxide. This bleaching effect is what causes skin and hair to lose pigment in irregular, and usually gradually-spreading, patches.
For those of us who have heard about the use of pseudocatalase in the treatment of vitiligo, but never really understood what it was, this makes perfect sense. The idea of pseudocatalase and UVB as a treatment is a) to raise levels of catalase in the skin whilst b) stimulating the skin with UV light to produce pigment.
I have never had pseudocatalase treatment, as such, but I'm beginning to understand now a little of the science behind how and why I have re-pigmented using certain nutritional supplements plus sun exposure. The green superfood blend that I use, "Five a Day+", contains catalase, as well as other free-radical fighters including superoxide dismutase (SOD) with catalase and the "Boost" capsules contain a number of minerals - including copper and zinc - which are known to promote the body's ability to create catalase.
Until I started to read up on the subject, my recovery was a mystery (it seemed like a miracle to me - which in a way it is!). But now the pieces of the jigsaw are starting to fall into place.
I never gave an organic lifestyle any more thought than the average person until recently. Eating organic food was an aspiration more often than a reality (depending on cost!) but organic cosmetics were not a priority and organic clothes were quite honestly not even on my radar. So, what's changed?
Well, I've been lucky enough to have regained practically all of my natural pigment after nearly 50 years of living with widespread vitiligo. (This has been as a result of using natural nutritional supplements in combination with regular sun exposure) and so during this process my focus has understandably been on supplementation. It's only now that I have the mental space to focus on other vitiligo-related topics that I have started looking into the importance of avoiding exposure to potentially harmful chemicals.
Most people with vitiligo are probably aware that one feature, or trigger, of this skin condition is oxidative stress and that vitiligo patients therefore need to avoid contact with synthetic chemicals to minimise this (as well as loading up on antioxidants, hence the green superfoods that form part of my re-pigmentation protocol). But how many of us are leading an organic lifestyle - or at least as natural a one as possible - which of course is the logical way of minimising contact with toxic ingredients?
I'm not fully organic yet, it must be said, but I am gradually switching over to natural (and organic where possible) toiletries and cosmetics. I now use an aluminium-free deodorant, eco-certified organic makeup and am about to switch from one of the less harmful permanent hair dyes to a natural henna product. I recently read that the same chemicals in mainstream hair dyes are also present in many fabric dyes too. This fact, coupled with the knowledge that wearing tight clothing that causes friction to the skin can cause vitiligo to spread, makes me wonder if it might also be wise for vitiligo sufferers to opt for organic clothing too.
Moving toward an organic lifestyle may seem like an uphill struggle at times, given the amount of research - and often expense - involved. But, given the cumulative effects of chemical exposure, I take the view that every little helps!
Virtually every website and medical leaflet on the subject recommends to vitiligo sufferers that they use sunscreen to prevent their un-pigmented skin from burning. What most of them don't say is that we may make matters worse by following this advice indiscriminately.
Most sunscreens are full of synthetic chemical ingredients and potential irritants. This means that, whilst they may well provide effective UV protection, they are also going to cause further oxidative stress to the skin - something which researchers now know vitiligo patients already suffer from more acutely than the general population.
So the irony is that in the very process of trying to protect our white patches from sun damage, we could be causing them to spread. The logical solution to this is either to avoid overdoing the sun exposure and manage without sunscreen altogether or else to opt for natural sunscreens instead. If you choose a 100% natural product, you could benefit twice over: 1) you will avoid the chemical nasties present in the high street brands and 2) you will almost certainly find that the natural ingredients include at least one powerful antioxidant like aloe vera or coconut oil - and this will help reduce oxidative stress as well as protecting you from burning.
Recent research suggests that people who - like me - have brown eyes are more likely to have vitiligo than those with blue or grey eyes, which is quite intriguing. The same study also found that vitiligo sufferers are less likely to develop skin cancer. This is at least some compensation for those of us who suffer from this troublesome and psychologically distressing skin condition. As I have been steadily re-pigmenting for the past 3 years (for which I am of course extremely grateful) I can only assume that my risk of melanoma will have returned to normal. Seems like something of a mixed blessing for all of us!
Just spotted this interesting article on the link between the digestive system and skin disorders - a fact which has been quite obvious to me for some time in the case of my own vitiligo. Unfortunately, most doctors seem to be oblivious to any possible link. Most dermatologists focus totally on the skin instead of on what systemic problems may be causing the patient's vitiligo, psoriasis, eczema or whatever. No wonder so many people with these complaints find holistic medicine more helpful than conventional doctors.
Feeling the creative urge, as I sometimes do, I have written the following freestyle poem in the hope that it may be as therapeutic to read as it was to write. It might baffle some readers but I think that anyone who has had widespread vitiligo will recognise the feelings of consternation, powerlessness and loss of identity that accompany the progression of this condition. But I hope that the relief and delight I have tried to convey at the return of my pigment will give others hope that this is not necessarily a one-way journey :)
VITILIGO: A Play(room) in 3 Acts
ACT I: Collecting Jigsaw Puzzles
My life has been a series of jigsaw puzzles, the first as pretty a picture as you could wish to see. It never occurred to anyone that anything could mar the image of a bonny baby in all her glorious honey-hued, gurgling perfection.
They never found out who crept into the playroom and stole the first piece. It was only one little piece – the size of a sixpence on the baby’s left ankle. Hardly noticeable. A pity though that such a pretty puzzle should be incomplete.
The next piece to vanish left a leaf-shaped hole in the baby’s back. Did someone accidentally knock over the board? Perhaps the lost pieces are on the floor or down the back of the sofa.
But if that is so, why could they find no trace? Surely it had to be the work of a thief because it did not end there.
The next puzzle was a toddler. How strange that the same pieces were missing here too. Not only that, but a third and fourth piece had gone – the other ankle this time and now a tiny gap at one corner of the child’s mouth. Why would anyone want to remove random pieces of the puzzle? And how did they do it without getting caught?
No one had any answers.
Successive puzzles depicting a panda-eyed schoolgirl, a shy adolescent, a carefully groomed young woman – all plundered by unseen hands – revealed more and more of the blank surface beneath and ever less of the subject herself.
One day I opened a new box and asked myself “Is this puzzle half here or half gone?”
There comes a point when a puzzle ceases to be a picture with gaps and becomes a blank space strewn with fragments like the excavated remnants of an ancient mosaic.
Would some archaeologist dig me up and fill in the blanks to show posterity what I once looked like?
The jigsaw of a woman in her 40s would have been quick to complete, since so few of the pieces actually connected. Scattered across the board, it was impossible to decide if they, or the space between them, were the real object of the exercise.
I suppose it all depends on how you look at it.
Over the course of 50 years my unplanned jigsaw collection progressed from Bonny-Baby to Can-You-Tell-What-It-Is-Yet? What would the next puzzle be called… The-Invisible-Woman perhaps?
If you think jigsaws are frustrating, try my next hobby…
ACT II: Painting by Numbers
Number 1 was the original skin tone, a light golden beige, my favourite pigment.
Number 2 was the colour of nettle rash, mottled and roughly textured.
This was closely followed by number 3, a stark white, applied almost symmetrically in in random patterns, some clearly delineated, others splashed carelessly across the canvas like spilt milk. (No sense in crying over it. There is no cure. It won't kill you.)
There’s nothing quite like summer for bringing out the colours of a painting. A hat and long sleeves were no match for the persistent sun and by the time the picture was finished, the numbered paints ranged from 1 to 20 with a different abstract brush stroke to go with each one. My canvas contained a tortoiseshell patchwork of shades from brilliant white to violet, golden ochre, burnt sienna, chestnut and scarlet.
And yet this was the height of my blue period.
I had to paint by numbers for 50 summers before I could enjoy my third (and final?) pastime…
ACT III: Joining the Dots
By sheer fluke, at the age of 51, I discovered the secret of the missing jigsaw puzzle pieces. They were there all along – just not visible to the naked eye.
They had been starved into transparency but, as I began to feed them, atoms of them materialised like specks of golden ink on blotting paper. Tiny dots like pixels on a grainy satellite image, jostling, overlapping and joining together until they looked something like the missing jigsaw pieces - if a little mottled with mildew.
And gradually the mildew has faded - along with the sense of loss - to reveal glorious, even colour.
Of all the activities I ever found in the playroom of my life, the most cherished, the most miraculous, the most deeply longed-for and appreciated has been this game of Join the Dots - an unremarkable pastime, you may think (if you have never walked in my shoes), but one which has brought me on a return journey along a jigsaw road from
by way of A-Pity-That-It’s-Incomplete
and finally – if not quite back to Bonny-Baby – then at least back home to a grateful woman of a certain age who can look in the mirror and smile to see her whole self.
Like most vitiligo people out there who read a lot on the subject, I've been aware for some time that oxidative stress is one of the likely causes of this skin condition - which is why I take green superfoods containing huge doses of antioxidants. Most of us know that antioxidants are the "good guys" that mop up free radicals and protect us from cellular damage. But we may not be quite so clear about the link between oxidative stress and vitiligo in particular. I found this very succinct explanation on the Vitiligo Support International FAQ page...
What is oxidative stress?
This is one theory about what may cause or contribute to the onset or exacerbation of vitiligo. Oxidative stress is an over-accumulation of hydrogen peroxide in the skin. Every person develops hydrogen peroxide in the skin, as a result of natural biological processes. An enzyme called "catalase" normally breaks down the hydrogen peroxide in the skin into water and oxygen. However, some people with vitiligo may have a problem manufacturing, using or delivering catalase to the skin.
When I read this, I congratulated myself on taking the green superfoods but it reminded me that for years I have been quite happily massaging hair dye containing hydrogen peroxide into my scalp every month to cover my grey roots... the irony had quite escaped me! From now on I will be using a 100% natural hair dye :)
My name is Caroline.