But not too many happy returns of the day
It only seems like a couple of years since I first heard of #WorldVitiligoDay but it is, in fact, four years old today. The brainchild of Steve Haragdon, who founded #VitiligoFriends, and Ogo Maduewesi, founder of #VITSAF, #25June is now firmly established on the social media calendar as a day to focus global attention on a skin disorder which is still poorly understood by the public at large and even by much of the medical profession. The aims of World Vitiligo Day include having the date recognised by the United Nations and are described on the official website as follows:
The ambitious goal of 25June Initiative is to mark World Vitiligo Day on June 25, a date to be observed annually by the United Nations. Longer term, the 25June Initiative aims to generate knowledge of vitiligo, its appropriate care, arrest and treatment methods amongst the general public, health care providers, and governments.
This year we aim to raise 500,000 signatures to address the United Nations in order to:
If you have not yet signed the #petition (and it's wonderful to know that 487,332 of the targeted 500,000 already have) please do it now. If you are not someone who usually signs petitions, I urge you to at least read the petition letter anyway. It eloquently and movingly makes its case and I believe you will be glad you read it, whether you choose to sign your name or not.
The sad fact is that, despite the publicity surrounding the late #MichaelJackson'sVitiligo, and in whose honour the World Vitiligo Day date was chosen, many of the 100 million plus vitiligo sufferers worldwide still face ignorance, superstition and social exclusion for no other reason than the patchy appearance of their skin. But the good news is that, year by year, thanks to World Vitiligo Day and also to the daily efforts of many support groups and individuals around the world, awareness and understanding of vitiligo is spreading. The success of these efforts is largely down to the reach of the internet and social media and, happily, this trend can only continue to accelerate. So, I have to wonder where we will be on June 25th another four years on. Let us hope that, by then, a universal awareness of what vitiligo is (and isn't) and how it affects those who live with it will have made life a lot simpler and less stressful for everyone affected by the condition. Or, even better, by 25th June 2019 it is entirely possible that advances in medical research will mean that living with vitiligo has become a thing of the past. So, my message today is “Happy Birthday, World Vitiligo Day – but let us hope not too many happy returns!”
What are phenols and polyphenols and how do they affect pigment loss?
Before you let the title of this post put you off reading any further, let me say that chemistry and biology were two of my least favourite subjects at school (joint second only to mathematics) so it comes as no surprise that I sometimes struggle to understand a lot of the medical research and other scientific information I find online as I continue to learn about #vitiligo. One thing I have learned though is that a little learning can be a dangerous thing because it is sometimes tempting to put two and two together and make five (and no - not even my maths were that bad!). However, I never let this risk put me off because, as this sign at Liberty University School of Law puts it, a little knowledge may be dangerous but “a lot of ignorance is just as bad”. And, since vitiligo seems to be one health issue that is still, relatively speaking, shrouded in ignorance (among large sections of the medical fraternity as well as the general public) I feel strongly that it is up to each one of us affected by vitiligo to take responsibility for being as well informed on the subject as possible. This is why I continue to read as much as I can about vitiligo, leukoderma, pigmentation disorders and related health problems and continue to discuss them in this blog.
One reason science can be so confusing to the uninitiated like me is the fact that certain data can appear to be completely contradictory if you take them at face value. The group of chemical compounds known as #phenols provide a good example of this. I have been aware for some time that industrial phenols can cause skin irritation and may trigger pigment loss and yet phenols are also common in nature and include tyrosine (an essential amino acid which is a crucial part of the very process which produces melanin in the body, essential to providing colour to skin and hair). So, it would be a gross oversimplification to say that phenols are bad for vitiligo! Phenols are simply a particular category of chemical compound (similar to alcohols but possessing a stronger hydrogen bond). Polyphenols, not surprisingly, are compounds made up of multiple phenols. These occur in nature, are among the most potent antioxidants found in our food and are the subject of research into the health-boosting effects of certain fruits and vegetables. So, when it comes to the word “phenol” it pays to understand what type of phenol you are dealing with: this link explains the difference between phenols and polyphenols and highlights the good, the bad and the ugly of these compounds.
Finally, for this post, I leave you with this article describing research into vitiligo treatment using vitamins, minerals and polyphenol supplementation, which concludes that “antioxidant supplementation is significantly beneficial in contributing superior clinical efficacy to cure vitiligo”. This conclusion, of course, supports the now well established view that low #antioxidant status in vitiligo patients is a key factor in the mechanism of pigment loss and reinforces the message that nutrition can play an important role in effective treatment of the condition when used to combat free radical damage in the body.
So how might chalk become your #VitiligoFriend?
Vitiligo (or #leukoderma /# leucoderma as it is variously known around the world) is often described as a condition in which the skin develops milky-white, or chalky-white, patches where the pigment in those areas has disappeared. Aside from this description, and a recent visit to the famous White Cliffs of Dover, I can’t say that I have given #chalk very much thought since school days (which goes to show how old I am, since chalk and blackboards were presumably consigned to history some time ago). But I have recently become aware of a new and surprising way in which this nostalgic substance is being used by fashion-conscious young people, and even some not so young people: a way that might provide a trendy option for anyone whose vitiligo has caused their hair to turn white.
I am, of course, talking about the relatively new trend of hair chalking, which is a fun way of applying temporary or semi-permanent colour to your hair that allows you to experiment with shades you might otherwise be too wary to contemplate.
Apart from the chance to try out some wacky colours and creative effects, hair chalking appears to offer a couple of additional benefits for anyone with vitiligo:
1. The most vibrant effects are evidently achieved when hair has no colour, which presumably makes depigmented hair perfect for the job.
2. Chalk is a natural substance and contains none of the chemical “nasties” present in hair dyes which can cause skin irritation and further depigmentation.
#HairChalking, though popular, is not for everyone. But, as someone who has always been interested in fashion and beauty, I often used to find that having widespread vitiligo prevented me from wearing the styles of clothing I would ideally have liked and I sometimes used to feel that I was not keeping up with current trends. So I can definitely see how hair chalking could offer a welcome opportunity for anyone in that position to have fun with different high-fashion looks at the same time as making a virtue out of the fact that their vitiligo may have left them with some areas of white hair or maybe no natural colour at all. So why not give it a try? After all, if you don’t like it you can always wash it out!
A real #VitiligoCure is the Holy Grail
In my previous post I commented on the fact that current #vitiligo #treatments focus on the symptoms rather than the causes of the condition. This approach is fine, as far as it goes. After all, the white patches – the obvious symptom of vitiligo - are the main problem. In fact, as far as most vitiligo sufferers are concerned, they are the only problem. No white spots = no more problem. However, there are several drawbacks to this approach to the condition.
I’m not saying the available treatments are not worth trying; far from it. I think everyone should be proactive in dealing with their health. But I do think the emphasis should be on getting to the real source of the problem and fixing that because only then can you be confident of improving your overall condition and getting rid of your white patches permanently.
Of course, getting to the real source of each individual’s vitiligo is the Holy Grail. If anyone knew how to do that the drug companies would be getting even richer, there would be no need for vitiligo support groups and I wouldn’t be endlessly blogging on the subject. But the breakthrough still seems to be some way off and I suspect that when it arrives, it will come piecemeal - in instalments – because there will need to be a variety of cures to address what appears to be a variety of causes.
Whilst I consider myself to have been extremely lucky to have almost randomly come across a nutritional regime that has almost eradicated my white patches and restored my natural skin colour by around 98%, I still consider this to be a treatment as opposed to a cure because I have yet to achieve 100% success and I am absolutely convinced that if I were to drop the nutritional supplementation the vitiligo would return. So, whilst I am extremely happy not to have had any relapse since repigmenting 5 years ago and am, in fact, still seeing improvements in the last remaining areas of uneven pigment, I am as keen as anyone to hear the good news that I am sure will one day be the topic of this blog – a real cure for vitiligo.
My name is Caroline.