It's a pity that we don't, on the whole, appreciate the beauty of #whitepatches on human skin in the same way as we do on animals... like this Paint Horse.
But the fact is that, unlike these lovely creatures, most people who develop white patches realise that their loss of skin colour (or leucoderma) is, in fact, not normal but is a sign that something is wrong. Discovering these patches for the first time can be a frightening experience and seeing them spread can result in feelings of depression, helplessness and even panic.
If you, or a loved one, are in this situation I hope that you will find this post and read my top 10 tips below: they are based on my own experience and are exactly what I would have benefited from hearing years ago if there had been anyone around back then to share them with me.
If you, or a loved one, suffer from vitiligo you will know how traumatic it can be. The psychological effects of any disfigurement (e.g. a burn, scar or birthmark) can be difficult enough to deal with, especially if it affects your face. But a condition that can alter your appearance on a daily basis, leaving you wondering what you will see in the mirror the next time you look, can cause the sort of mental trauma that cannot really be comprehended by anyone who has not experienced it first-hand.
Happily, there are more encouraging advances in vitiligo research being reported now than at any time in the past, but there still does not appear to be any real agreement as to the root cause of the pigment loss that characterises the condition. To my mind, this strongly suggests that there is no single trigger for this but rather a variety of different ones, any or all of which can cause the onset of the condition. I have posted on most of these over the past few months but have not – until now - mentioned one of the more commonly reported triggers: physical trauma.
#Physicaltrauma does not have to be dramatic to result in pigment loss. It can include #friction from tight clothing or other rubbing action (this effect is known as the #Koebner phenomenon), minor cuts, scrapes, stings and injections, as well as the major league stuff like surgical incisions and serious flesh wounds. Interestingly, most people experience loss of pigment at the site of inoculations and surgical scars and some people never regain their normal skin colour following minor cuts and abrasions. Most of these people do not go on to develop vitiligo as a result. Yet a small percentage of the population do develop vitiligo and can trace its onset back to a particular physical trauma and many people with existing vitiligo experience a worsening of their pigment loss around the sites of such events. So, it does seem clear that, even though physical trauma is highly unlikely to be the root cause of vitiligo it is certainly a fairly common trigger.
Some of the historical research into this subject can be found here. And more recent research, carried out by Dr Matteo Bordignon of the University of Padua, Italy, has identified a protein (MIA: Melanoma Inhibitory Activity) that may be the main factor affecting the development of vitiligo. According to Dr Bordignon, this protein is not only the reason why people with vitiligo - contrary to popular belief - have a lower risk of skin cancer, but it also interferes with the normal adhesion of melanocytes (pigment-producing cells) to the basal membrane in the skin, causing them to detach and white patches to develop in those areas. His findings add weight to other research suggesting that physical trauma often plays a role in this process of melanocyte detachment.
This research certainly seems to represent a significant breakthrough in the quest for an effective medical treatment for vitiligo, so I am very encouraged by it. And, in the meantime, my attitude is that we all have access to other treatments that have been proven to be effective to varying degrees e.g. (light therapy, pseudocatalase, nutritional cures, etc.) so let's be positive about our prognosis and let's spread the word that a definitive cure is getting closer and that having vitiligo does not have to be a life sentence.
MYTH 1 In vitiligo the pigment producing cells (melanocytes) are destroyed.
If, like many of us, you are in the habit of googling around the subject of vitiligo you will have come across a large number of websites and articles that describe vitiligo as a condition in which white patches occur on the skin as a result of the destruction of melanocytes. You are even quite likely to have been told this by your doctor. But, thankfully, it simply isn’t true. Both anecdotal and scientific evidence show that the melanocytes in vitiligo-depigmented skin are not dead but merely dormant or blocked in some way and that they can – with the right treatment – be revived.
MYTH 2 Diet has no role to play in vitiligo.
This is a favourite with most doctors. Whilst the medical profession in general pay lip service to “eating a healthy, balanced diet” for general health, doctors are nearly always skeptical on the subject of the part that nutrition may play in specific diseases. And, in my experience, any suggestion that food choices could have an impact on vitiligo is usually met with a patronising smile and a dismissive wave of the hand. I find this attitude totally mystifying, given that all of the internal chemical and biological processes of the human body rely on the fuel that we put into it and that it has been self-evident to generations of lay people that “you are what you eat”. I can only put this complete lack of joined up thinking down to the fact that medical doctors receive very little education in nutrition and are so influenced by the drug companies that they have lost touch with the teachings of the founding father of modern medicine, Hippocrates, whose motto was “Let food be they medicine”.
MYTH 3 Vitiligo sufferers are at higher risk of developing skin cancer as a result of sun exposure.
For years vitiligo sufferers were given this warning. But, as it turns out, this belief was based on an assumption, not on fact. To be fair, this assumption was based on a logical thought process. Pigment is known to protect the skin from sun damage, therefore it should follow that lack of pigment will leave it more vulnerable to such damage, including skin cancers. However, research has proved that, in the case of vitiligo, the opposite is in fact true.
MYTH 4 If you have vitiligo you should stay out of the sun and/or wear sunblock.
In light of the previous point, this well intentioned advice has to be open to question. If vitiligo sufferers are less likely to get skin cancer, it is probably less crucial for them to protect themselves from the sun. But there are also three additional reasons why it might be wise to ignore this advice. One is that many people with vitiligo – especially those who are also using either a topical or oral treatment – experience repigmentation when exposed to UV light so avoiding it can be counterproductive. The second is that lack of sun exposure can lead to vitamin D deficiency, something that many people with vitiligo already suffer from. And the third is that wearing sun block can actually make vitiligo worse due to the chemical ingredients in many of these formulations. Phenols, in particular, are known to increase the already high levels of hydrogen peroxide present in the skin of those of the typical vitiligo sufferer.
MYTH 5 Vitiligo is a purely cosmetic problem.
This opinion is yet another fiction created through constant repetition. How many of us have heard it from the lips of well-meaning medical practitioners who no doubt think they are helping us to achieve a sense of proportion about something that is, after all, not a life-threatening condition? However, the fact is that for many people vitiligo is a very serious psychological and social problem. It is the cause of a great deal of anxiety for some and chronic depression for others. And, in some cultures, it can result in stigmatisation and social isolation. Not only that, but some in the scientific community are finally coming round to the view that vitiligo rarely (if ever) exists in a vacuum. It is almost always associated with other diseases and there is good reason to think that it is itself a symptom of other underlying systemic conditions.
MYTH 6 There is no difference in texture between vitiliginous skin and normal skin.
This is another assertion that can be found in numerous articles but is not necessarily borne out by experience. I accept that there may be a number of different types of vitiligo and my experience may not match everyone else’s. But the fact is that my white patches always exhibited an accelerated rate of skin-renewal compared to the rest of my skin. Whereas my normal skin would remain smooth and shed dead cells at the normal rate, my white patches would develop a build-up of dead skin cells every few days that would peel off quite easily when rubbed firmly with finger tips. In addition to this, an itchy, bumpy rash accompanied the onset of many of the lesions and, in some cases, this would flare up again from time to time.
MYTH 7 There is no cure for vitiligo.
This – I’m very glad to say – is the biggest myth of them all. There may not be a magic pill, inoculation or operation that will guarantee to reverse vitiligo, or prevent its onset. But there are many effective treatments that have been developed over the years as a result of conventional wisdom, trial and error and medical research. The scientific and anecdotal evidence for this is overwhelming and I am just one example among many of this fact.
So my message to everyone reading this is simple: when your doctor, dermatologist, best friend, newspaper or trusted website dispenses well-meaning, but depressing, advice about vitiligo, bear in mind that it ain’t necessarily so. I’m here to tell you that your dormant melanocytes are not dead; what you eat does make a difference to your condition; you are not at higher risk of skin cancer than other people; you don’t necessarily have to accept what the professionals tell you about what vitiligo is or isn’t - or how yours should or shouldn’t behave - and - most importantly of all - it is reversible :)
I received an email this week from the makers of a Channel 4 TV #documentary which could offer an opportunity to raise awareness and understanding of what vitiligo is and how it can affect people socially and psychologically. (You may remember me posting about a previous series last November.) I have copied the email below:
"I work for a TV production company called Betty and we are now in our fourth year making a vibrant, romantic and insightful documentary series which will follow disabled people and those with a variety of conditions on their quest to find love. The series explores society’s attitude towards disabled people and people with different conditions and how this can affect relationships.
The title is provocative and thought provoking to challenge how disabled people and those with a range of conditions are viewed in society – the “Un” in the Undateables’ title drops off to re affirm that everyone deserves to find love.
We’re currently in the process of talking to a number of organisations, including leading disability networks and charities about the series to ensure all issues are handled sensitively. Alison Walsh, Channel 4’s Disability Adviser is also working with us on the project.
We’re really excited about the series returning and feel it is a great opportunity to continue creating a greater understanding about the issues and prejudices that are faced."
This link will take you to a previous series of the documentary so you can see for yourself how the programme approaches its subject matter. If you think you might like to take part in the forthcoming series, or if you would just like to ask some questions without any commitment, please call 0207 290 0223 or email firstname.lastname@example.org.
It’s been over 4 years since my natural skin colour started to return (thanks to a nutritional approach that I stumbled on more or less by accident) and, even now, new pigment is continuing to appear.
Since 2010, virtually all of my previously white patches have filled in with wave upon wave of freckles, which have joined up and gradually smoothed out into my original skin tone. A few areas are still quite freckled and mottled but the depth of skin tone is continuing to increase and even out year on year, particularly in the summer months when it’s sunny - which, happily has been the case in the UK this year.
The only remaining areas that don't look fully pigmented are my hands and feet, which – whilst they have developed quite a few freckles – have remained very pale and patchy. Hand and feet are notoriously slow to respond to any vitiligo treatments and most doctors will tell you that they very rarely repigment at all. With this in mind, I had more or less begun to think - after 4 years - that maybe the pigment in these areas really was dead and I would have to accept that these would be the only parts of my body that would not achieve full repigmentation. However, much to my delight, I have seen a lot of new freckles appearing this summer (see photos).
So, it just goes to show that it really pays to be patient, especially when it comes to natural treatments. Vitiligo generally develops gradually over an extended period of time (mine took the best part of 50 years to get to the point where it covered about 80% of my body) so it’s not altogether surprising that recovery takes time too.
My name is Caroline.