Mitochondrial research could be the key to a leukoderma cure
The internet is teeming with information about vitiligo: clinical papers, research updates, support groups, blogs and authority websites are all rich sources of fascinating facts and figures, comments and opinions. This is a good thing if, like me, you enjoy reading up on the subject.
Over the past five years or so – ever since discovering, by chance, that nutrition was the key to getting rid of my #vitiligo - I have made a point of finding out all I can on the wider subject and have amassed a fair amount of knowledge as a result. It is one thing to have found an effective treatment for myself – a wonderful and totally unexpected thing - but it would be even better if I also had a clearer idea of the root #cause, not least because - once that is known - a universal #cure is bound to follow.
Because I was able to reverse my pigment loss and recover almost 100% by taking nutritional supplements, my natural assumption was that the root cause of my vitiligo was poor digestion resulting in certain nutritional deficiencies. This theory seems all the more credible when you take into account that I have suffered from #intestinal problems all my life. However, this still doesn’t reveal a root cause for my past pigment loss because presumably something must have caused the intestinal problems in the first place. This thought process is a familiar one in the context of vitiligo: as soon as you start to investigate possible causes it becomes a bit like peeling away a layer of an onion only to find the next layer underneath. And, even if you get close to the heart of the matter, there’s always the possibility that we might not even be dealing with just one onion!
For example, it is a well-established fact that vitiligo sufferers have massively higher levels of hydrogen peroxide in their skin than people who do not have vitiligo. So, is this oxidative stress the cause of pigment loss? Well, yes – it probably is. But what is causing these abnormal levels of oxidative stress in the first place? One theory is that the particular type of oxidative stress that can lead to vitiligo is caused by something called mitochondrial failure.
If you have a background in biology or medicine you will know what mitochondria are. But, for the rest of us, they are the tiny structures present in most of the cells in our body that convert the energy from our food into a form that the cells can use. Each mitochondrion is made up of roughly 3000 genes and they perform a host of different biological tasks. But, put very simply, mitochondria are responsible for creating more than 90% of the energy needed by the human body to sustain life and support growth. On the other side of the coin, mitochondria sometimes fail, shutting off their vital energy supply and resulting in the death of cells, leading eventually to a variety of mitochondrial diseases.
One of the perfectly normal effects of mitochondrial activity is the production of ROS (Reactive Oxygen Species), chemically reactive molecules that are a natural by-product of normal metabolism. However, #research has shown that mitochondrial ROS production in subjects with active vitiligo is out of control, causing abnormally high levels of #oxidative stress. So, it seems that the answer to the question “what causes the oxidative stress that, in turn, causes vitiligo?” could be mitochondrial failure. Of course this then poses the next question, which is what causes the mitochondrial failure? And so we come to another layer of the “vitiligo onion”!
Shedding light on #phototherapy
Ever since my# vitiligo started to repigment five years ago, with the aid of nutritional supplements and sunshine, I have been fascinated by both elements involved in the process of my recovery. I have written a lot about the nutrition involved but, until now, very little about #sunshine. So, this week I am going to rectify that, which is appropriate because I just spent an enjoyable morning watching the eclipse so the sun is very much on my mind!
In particular, I want to explore the subject of #narrowbandUVB because this is the type of light most often used nowadays in treating vitiligo (as well as #psoriasis and #eczema) and it is what I used during the winter months so that my rapid repigmentation during the spring and summer of 2010 could continue at the same rate even without the benefit of sunshine.
I’ve often wondered what narrowband UVB light actually is and decided to do a bit of research to find out. I found the answer quite fascinating, so if – like me – you are not a scientist and would like a quick layman’s guide to where this specific type of light fits in with all the other types, read on!
Just about everyone in the world has seen a rainbow. Many of us first learnt about the sequence of colours in the rainbow by memorising the acronym ROY G BIV (Red, Orange, Yellow, Green, Blue, Indigo and Violet.) But, unless we paid particular attention at school, we may not be aware that the visible spectrum of colours that we see in the rainbow forms just one part of a much larger electromagnetic spectrum. When we talk about light we are usually referring solely to this visible portion of the electromagnetic spectrum (the part that splits into a rainbow when passed through a prism). But, in reality, there are other forms of light that are not visible (like x-rays and gamma-rays) and this is where infrared and ultraviolet come in. If you have ever wondered exactly what these types of light are and just what is so red or violet about them, then this blog post is going to be right up your street!
In the year 1800 Sir Frederick William Herschel, a musician and astronomer, discovered that different colours possess different degrees of heat (strange as that may sound to the non-scientists among us). After noticing that the temperatures of the colours in the visible light spectrum increased as you move from the violet to the red part, he decided to measure the temperature just beyond the red portion of the spectrum where no light is visible. To his surprise, he found that this region had the highest temperature of all. This was how he discovered an invisible form of radiation beyond red light which, logically enough, became known as “infrared” light (“infra” meaning “below”). Just one year later, inspired by Herschel’s discovery, physicist Johann Wilhelm Ritter decided to conduct experiments to determine if invisible light existed beyond the other end (the violet end) of the spectrum as well. Guess what? It did! And this became known as “ultraviolet” (“ultra” meaning “beyond”).
Sunlight contains both IR and UV light. As already explained, neither of these types of light can be seen by the human eye. But IR light is felt as heat and UV, whilst it cannot be felt, is responsible for the tanning process, a protective reaction designed to prevent the UV rays from penetrating into the deeper tissues of our skin. So, this is why UV is the specific type of light used in phototherapy for vitiligo.
So, now we have a better idea what ultraviolet light is, the next thing to mention is that there are three types of UV light: A, B and C (no – I’d never heard of UVC either!). UVC rays are the shortest and strongest of the three, but most people have never heard of them because they are absorbed by the ozone layer and don’t typically reach the surface of the Earth. UVA and UVB, on the other hand, are both present in the sunlight that reaches us. What is the difference between the two? Well UVA has a longer wavelength and UVB has a shorter wavelength. The main difference, from the point of view of someone who likes sunbathing or whose job exposes them to the elements, is that both types of UV can be harmful to anyone who is over-exposed to them. Given too much exposure, UVA rays age us and UVB rays burn us and an excess of either one can lead to cancer. UVA rays penetrate deep into the dermis, the skin’s thickest layer whereas UVB rays will usually burn the superficial layers of your skin. ( On the other hand, of course, without sunlight we would die and moderate sun exposure is essential for the production of vitamin D which maintains healthy bones). The main difference, from the point of view of someone with vitiligo or any other light-responsive skin condition, is that UVB has proven to be much more therapeutically effective than UVA. When I was a young woman looking for an effective treatment for my vitiligo the treatment of choice was PUVA. This is UVA light therapy administered in conjunction with psoralen which makes the skin more sensitive to light. The reason why psoralen medication was needed is that UVA light alone is not very effective, hence the preference nowadays for UVB treatment instead.
If you have followed the story so far, the popularity of UVB in modern phototherapy will make perfect sense. But what about the “narrowband” part of narrowband UVB treatment? Well, there are two types of UVB treatment to choose from: broadband and narrowband. The major difference between the two is that narrow-band UVB units emit a more specific or “narrow” range of UV wavelengths and has been found to be more beneficial in skin therapy than broadband. So this is why it is the most popular and effective light treatment today.
So how crucial was narrowband UVB to my recovery from vitiligo? The quick answer is: not crucial - but it did help speed things up. Within a few weeks of starting to take the nutritional supplements all the vitiligo patches that I was able to expose to sunlight began producing freckles which multiplied and started to join up. This continued throughout the spring, summer and early autumn during which time I was spending around 30 minutes a day in the sunshine at least three or four times a week. As the summer came to an end I asked my doctor to refer me for narrowband UVB treatment, reasoning that this should avoid any slowing of the repigmentation process over the winter. In fact, the pigmentation not only continued during my course of UVB treatment but it accelerated and achieved a darker colour overall than the sunshine alone had achieved (too dark really, given that it was very mottled at that stage but it evened out eventually after the UV treatment ended).
So, I would have to say that, based on my own experiences, the amount of UVB present in natural sunshine is sufficient to repigment vitiligo - as long as any nutritional deficiency is addressed at the same time – but that nutrition plus narrowband UVB can produce even faster results.
But what does that have to do with vitiligo?
Happy #Mother’sDay to all Mums out there! If you live in the UK you will know that this Sunday mothers across the country will be waking up (far too early probably) to a very well-intentioned, but possibly unappetising, breakfast tray, which will be duly admired with much ooh-ing, aah-ing, thanking and feigning surprise. The contents of said tray – with the exception of the single daffodil in a jam jar – must then be consumed with enthusiasm, even if the cornflakes are a bit soggy and the toast has had a layer of charcoal carefully scraped off over the sink. Of course, if your children are too old, or too sophisticated, for this scenario to ring true you are just as likely to be presented with smoked salmon and eggs, scrambled to perfection, served with a glass of bubbly at exactly the right time in the morning and will not be allowed to do a stroke of work all day. You will almost certainly have cards to read, telling you that you are the best Mum in the world, and maybe gifts to open too. (Do I hear anyone muttering “yeah, right!”?)
Whether the day is a delight or an ordeal depends on too many variables to mention here but one thing is for sure: Mums everywhere deserve to be appreciated and spoiled. Ideally, every day of the year would include some appreciation for everything a mother does for her family day-in and day-out. But, of course, we all know that familiarity breeds … well, hopefully not contempt but certainly being taken for granted. So setting aside a particular day in the calendar to make a special fuss of Mum is definitely something to celebrate.
I have to admit, though, that I do find the #over-commercialisation of this celebration a bit sad because its simple and touching message is often lost amid the hype and mounting pressure to spend hard cash on doing absolutely everything the TV ads tell us we should. And, BTW, if you think Mother’s Day has become over-hyped, take a look at this website which lists some of the other commemorative days the retailers would probably love for us to celebrate - like International Ask a Question Day (I can think of one… Why?) While I am on the subject, there are some really wacky commemorations that you might want to surprise your friends with, like National Two Different Coloured Shoes Day (May 3rd, if you were wondering). You’ll find 75 of these silly special occasions here – definitely worth a laugh.
Apparently Mother’s Day has been celebrated since the days of Ancient Greece and Rome. So it's certainly nothing new. Here in the UK Mother’s Day started out as a date in the Christian calendar (it falls on the 4th Sunday in Lent) and usually involved nothing more than the pastor extolling the virtues of motherhood in his sermon and all the children in the congregation being given a flower to hand to their mother on the way home. I know the world has moved on several billion light years since those days but I do feel some nostalgia for their sincerity and simplicity. For example, back then, the commemoration took place on one day. Now, I notice that advertisers are referring to “Mother’s Day Weekend”, obviously hoping to encourage an extra day’s spend on treats, outings and gifts. I certainly don’t begrudge any Mums the VIP treatment but it does seem to come at an ever-increasing price.
Interesting though this all is, you may be wondering what it has to do with vitiligo which is, after all, my usual blog topic. Well, my mind set off along this train of thought earlier in the week when I received an email from a #vitiligo sufferer in her early 40s who had visited my site looking for an effective treatment. This person, a mother herself, told me that her mother blames herself for her daughter’s vitiligo. Apparently she had her daughter at a very young age, was not able to look after her properly and didn’t feed her as frequently as an infant should be fed. When I read this, my heart went out to the daughter and the mother. I felt for the daughter because I know from personal experience what it is like to grow up with vitiligo and the distressing psychological effects this can have. I felt for her mother who must have had a very difficult time trying to look after a new-born at such a tender age herself. And what struck me was the fact that, like most Mums, she took on a huge burden of guilt for the fact that her daughter has suffered. Rightly or wrongly, she evidently feels that total responsibility for her child’s welfare and happiness rests on her shoulders - even now that her child is a mother herself - and this seems to me to be not just part of a mother’s job description but part of her DNA. I can remember my own mother telling me she often wondered if she did something wrong either during pregnancy or afterwards that led to my vitiligo. I am not a mother myself but I have noticed that Mums are often quick to give their children the credit for the things that go well in their lives and equally quick to take the blame for anything and everything that goes wrong. Perhaps that is one of the many reasons we love them so much.
Anyway, back to Mother’s Day… if you would like to know its history or the different dates it is celebrated in the various countries around the world take a look at this site which seems to contain everything on the subject you could possibly wish to find, including some lovely quotations and poems for those home-made cards that are no doubt being crayoned, daubed, glued and glittered as I write this.
So, I will end this post by saying again "Happy Mother’s Day" to UK Mums for Sunday (and, coincidentally, "Happy Quilting Day" too) but before that day dawns, please don’t forget that tomorrow (March 14th) is International Fanny Pack Day… yes, really!
One skin condition: different reactions
I have been trawling the internet over the past few weeks for other vitiligo blogs and success stories. I have found a lot of personal accounts, rather fewer success stories and, along the way, I have come across some very sad tales too. I have been moved, inspired, challenged and reduced to tears by many of these stories and would like to mention just a couple of them to illustrate how diverse people’s reactions can be to having this #depigmenting skin condition.
I’m glad to say that the vitiligo forums like Vitiligo Friends, Vitiligo Forum, Vitiligo Support International, Daily Strength and Patient.co.uk (not to mention all the social media channels for vitiligo) are full of personal accounts from ordinary people around the world who have vitiligo and who cope, to a greater or lesser degree, with its everyday consequences. (So, if you ever feel isolated by your condition, as I did myself, I highly recommend visiting these sites where you will come across others who are happy to share their experiences and swap tips, photos and encouragement. Connecting with others who understand what you are going through can make all the difference in the world.)
But then there are some #vitiligostories that stand out from the rest – not because of the type or extent of the vitiligo involved in each case, but because of the way in which the individual sufferer has responded to their situation.
At one end of the spectrum is the inspiring, almost fairy-tale story of Winnie Harlow, the former America's Next Top Model contestant, whose real name is Chantelle Brown-Young. Diagnosed with vitiligo around the age of four and bullied at school for her two-tone skin, she went on to become an iconic fashion model at the tender age of 19 and a confident and compassionate advocate for vitiligo sufferers everywhere. (Read more about her here.)
At the other end of the spectrum is David’s heart-breaking story as told by his family on the American Vitiligo Foundation website. Tragically, David, a bright, 25 year old collage graduate from New York, evidently found his vitiligo too much to bear and was so distressed that he took his own life less than a year after being diagnosed.
Judging from the photos of David, he was a really good-looking guy and maybe that just made the difficulties of living with a progressively “disfiguring” condition even more unbearable. On the other hand, Winnie Harlow is an exceptionally good-looking girl and yet, her response to the patchy loss of her lovely brown pigment has been to face it head-on and turn it into an asset and a public symbol of tolerance and unconditional love.
This goes to show that the ability to adopt a positive mind-set in the face of considerable adversity varies hugely from one person to the next. I suspect too that, it may go to show how much more support and encouragement is available via modern media now than there was when David died just 7 short years ago in 2008. Who knows if he would have felt as helpless and hopeless now that there is a greater awareness of vitiligo and a whole online support network as he obviously did back then? My heart goes out to his family and to all those who have ever contemplated #suicide because of their vitiligo.
I have always thought that the cliché “What doesn’t kill you makes you stronger” was just one of those glib expressions that people use in order to sound profound. But it seems to me that a truer word has never been spoken when it comes to living with vitiligo. The doctors are fond of telling us that it isn’t life-threatening. But for David, it was – and sadly, for many others struggling with depression and isolation as a result of their pigment loss, it is highly dangerous. But the other side of the coin is that facing what, for many people, is their worst nightmare – losing their looks, their identity, their confidence, their social standing and, in some cases, even their ethnicity – and coming out the other side does indeed make them stronger. It makes them more courageous, more positive, more appreciative, more tolerant and more compassionate. In my experience, vitiligo sufferers are among the most generous-hearted people on the planet and often, like Winnie Harlow, they demonstrate wisdom well beyond their years.
I will leave you, for now, with a link to a site that exemplifies my last statement. The VITSAF (Vitiligo Support and Awareness Foundation) site has a great blog that focuses on building and sharing self-confidence, self-acceptance and hope. It is certainly not the only place you will find these kinds of messages. Just put "vitiligo", "hope" and "encouragment" into your search engine and you will find plenty more. But it is a great place to start and I hope you will find it as wonderfully uplifting as I do.
My name is Caroline.