More to tanning than meets the eye
Twenty first century medical science is so advanced and sophisticated – or so we tend to believe – that it comes as a surprise that many of the familiar processes that occur in the human body are still largely a mystery. One process close to my heart, and to the hearts of millions of people around the world living with #vitiligo, is how human skin tans. Almost everyone has a general grasp of how this works: when exposed to sunlight healthy skin creates #melanin – a pigment that darkens the skin in order to protect it from UV damage. Simple, right? Well, maybe not quite so simple after all.
As recently as 2009 scientists began to suspect that the conventional understanding of the tanning mechanism had some significant gaps. A study into Rhodopsin (a light-sensitive protein found in the retina of the eye and responsible for the visual perception of contrast) suggested that a series of such proteins may also be present in skin.
This surprising theory was borne out in 2011 by researchers at Brown University in Providence, Rhode Island, USA. (It seems fitting that research into the tanning process should be carried out at a university called Brown and that Rhodopsin should be studied in Rhode Island… but I digress!) The study found that melanocyte skin cells do indeed detect ultraviolet light using a photosensitive receptor previously thought to exist only in the eye. Not only does skin possess this eye-like ability to sense light, but it triggers calcium ion signals that instigate melanin production and this melanin production occurs much faster than previously thought: in fact, the calcium signalling starts within seconds of the UV exposure and melanin begins to accumulate within an hour, peaking about 24 hours later.
When I came across these findings online, I immediately wondered if the discovery had prompted any research into how this new knowledge might be used to find a cure for vitiligo. Sadly, I could not find evidence of any such research (although that is not to say that it isn't ongoing and yet to be published). I also wondered what connection, if any, there might be to the fact that many people with vitiligo have some abnormalities in their retinas (the inner layer of the eye that contains the light-sensitive Rhodopsin cells).
There have been a number of research papers published relating to retinal degeneration in mice with vitiligo. Evidently the Rhodopsin levels in vitiligo mice are lower than in normal mice and the part of the retina in the eye that contains the light receptors is unevenly pigmented. But my very limited grasp of the science involved leaves me unsure of the potential relevance of this to human vitiligo research. So, if anyone reading this post has a better understanding or any insight into the topic, please do get in touch and let me know (firstname.lastname@example.org). I promise to revisit the subject if I find out anything else of interest.
In the meantime, I will content myself with the thought that human skin is even more weird and wonderful than I had previously thought and that, given the sheer number and complexity of processes involved in maintaining its health, it is a wonder that anyone on earth has “normal” skin. In fact, I suspect that we all occupy a position somewhere on the "abnormal" scale to one degree or another and vitiligo is just one example of this reality.
A review of Hairprint
The idea of a hair colourant that contains no potentially harmful chemicals whatsoever is a pretty attractive proposition for all of us. And the claim that it restores grey hair to its natural colour in 90 minutes by “mirroring the natural process of hair pigmentation” sounds even more intriguing from a vitiligo perspective. This even set me wondering if something similar could be developed that would mimic the natural pigmentation process of the skin. But maybe someone is already working on that. Anyway, I read everything I could find online about Hairprint and also contacted the manufacturers direct to ask a few questions. What I found out was mostly good and I have summarised it below under the headings of PLUS, MINUS and STILL TO BE DETERMINED.
On the plus side, the Hairprint website categorically states that the product is “safe and toxic-free” and that no strand test is necessary before use, unlike any other colourant I have ever come across. This demonstrates a very high degree of confidence on the part of its American creators, who must be as aware as the rest of us of the litigation culture in the beauty industry and in that country in particular. The reason for their confidence is that the formulation consists of just 8 ingredients that are all very innocuous and because the product is a hair treatment rather than a dye, it contains none of the chemicals that have been associated with cancer or any other adverse effects.
The cost, at $39 US, is more than twice the price of Surya Brasil Henna Cream (my current hair colour product of choice), but still seems to me to be a reasonable amount to pay, especially if it does what it says on the tin.
On the minus side, Hairprint only works for brown and black hair types (any shade from very light brown to black). Apparently the reason it does not work on blonde, red, chestnut or auburn hair is because those hair types contain an additional pigment called pheomelanin, whereas Hairprint only replaces eumelanin, the pigment in black and brown hair. However, the manufacturers say they are continuing to develop other formulations that will work on other shades. So, perhaps it is just a matter of time before these become available.
A further drawback (at least for anyone wanting to change their natural colour) Hairprint will not alter your original shade: it only returns the greys to their natural tone. But I suspect that most of us with hair affected by vitiligo are more concerned about getting that to blend in rather than having a complete change of image. So, if you are wondering what the catch is with this miracle product, it is not a permanent “cure” for grey hair. It has to be reapplied regularly because the roots need to be treated as they grow through. But then this is no different from a dye, with the one massive exception that it is not toxic.
STILL TO BE DETERMINED
So far, so good. My impression is that, whilst this product is not a miracle, it offers far more pluses than minuses. However, there were two questions the makers of Hairprint answered for me that I was unable to categorise as either plus or minus, which is why I am including them in this final category.
Firstly, I asked about the one and only ingredient out of the eight that concerned me (the others being water, baking soda, mucuna pruriens, sodium carbonate, carbomer (a thickener), diatomaceous earth, manganese gluconate, and ferrous gluconate). The ingredient that caught my eye was hydrogen peroxide. Whilst the small quantities of hydrogen peroxide that are in this product would not be harmful in any way to most people, I was concerned about the risk of further increasing free radical activity in the skin in cases of vitiligo, where this is known to be part of the de-pigmentation mechanism. The website states: "The concentrations of hydrogen peroxide we use are, 1%, 1.5% and 3%. In conventional hair dyes, peroxide is used to break open the hair, and can be up to a 12-15% concentration. We do not use peroxide to open the cuticle of the hair (which is very damaging) but rather to oxidise the mucuna pruriens extract. When applied to your hair, the peroxide is virtually gone." This explanation went some way to reassuring me but I also asked the company for more information and they replied that their laboratory tests show that the peroxide disappears in less than 180 seconds, and emphasised that it is only present in small quantities to begin with. They could not offer any further advice for people with vitiligo since no specific tests have been done in this context. For the same reason, they were also not able to comment on how well Hairprint works on vitiligo de-pigmented hair as opposed to normal grey hair. I pointed out that vitiligo greys can be particularly resistant to colouring and treatments. They were aware of this fact but no comparisons had been made on this. However, I was told that they do have customers with vitiligo who use the product, which would suggest that they are happy with it.
I have not added Hairprint to the product range at VitiligoStore.com as I have not yet tried it for myself. I must confess that this makes my comments less of a review and more of an opinion based on what I have researched. I am so in love with the grey coverage and enhanced colour that Surya Brasil Henna Cream is giving me that I am in a bit of a quandary as to whether or not to swap products at this stage but I will certainly white another piece on Hairprint if and when I do to share my experiences. Luckily for me, I am a brunette so I do, at least, have the choice of using Hairprint if I want to. And, with the exception of the small amount of hydrogen peroxide (which, incidentally, does not feature in the Surya Brasil product) the purity and simplicity of its ingredients, and the fact that it is not a dye ,do make it a tempting option. One thing is for sure, both products are as pure and gentle as the proverbial driven snow when compared to most other hair colourants on the market. But, when it comes right down to it, the only way to avoid any possibility of coming into contact with a substance that aggravates vitiligo is not to use any proprietary products at all (including shampoos, conditioners, hair sprays, etc.) which isn't very practical. So my stance on this is to continue researching available products and choosing those with the safest ingredients that pose the least potential risk.
... is curable
In my opinion, the worst symptom that anyone with #vitiligo can suffer is not the loss of skin pigment: it is the loss of hope. If you lose patches of colour, but still have hope, you are so much more likely to find a treatment that helps. But if you lose your hope of finding something, it becomes highly unlikely you ever will. Not only that, but without hope you feel helpless and are not in any position to offer hope, or help, to others.
For years I believed what successive doctors told me and what was written in the official medical literature of the time, which claimed - in so many words - that vitiligo was an incurable, purely cosmetic, non life-threatening condition that must simply be endured. This left me feeling both hopeless and helpless. The only coping strategy left to me was to use every means possible to cover up my white patches and pretend to myself, and the rest of the world, that they were not there. The trouble with that strategy was that, whilst I was successful in hiding it from the rest of the world, undressing and taking off my make-up at the end of the day was a fresh reminder of my “secret life”.
I read recently about an old lady whose Alzheimer's meant she suffered the full force of bereavement on a daily basis every time she found out that her husband had died years before. Well, that is the best way I can describe my feelings during those years. The more successful I became at putting my vitiligo out of my mind during the day, the harder it was to come to terms with it every time I was forced to look at it. What I now realise is that living in denial for decades is incredibly stressful and destructive. The inner tension it causes is like being at war with yourself and you can never fully relax and be the real you. To me, this is the literal definition of being uncomfortable in your own skin.
Looking back on it all now, I think there were probably only two ways I could have relieved this constant tension and they are not mutually exclusive. One would have been to stop trying to hide my skin condition from others and just make my peace with it. Some strong people are able to do this and I cannot describe how much I admire them. But I'm sure many people reading this blog will understand me when I say that I simply didn't have it in me to achieve that kind of acceptance or to expose myself to the curiosity and comments of others. The other way – which I kind of fell into by chance – was to be proactive, rediscover my lost hope and take my treatment into my own hands.
For any readers who don't know the story of my re-pigmentation you can find it here. I won't go through it again in this post. But what I do want to emphasise is that the very process of discovering a protocol that helped my vitiligo finally helped me to stop living in denial. Even though it was just a few freckles to start with, the visible proof that my white patches were capable of producing pigment allowed me to think about my condition without my former sense of despair. Just the very fact of changing my outlook from resignation to being proactive totally changed the way I felt about myself and my whole future. I immediately felt a sense of normality returning - as if I were re-joining the rest of the human race for the first time in decades. I finally realised I was not helpless after all. Not only that, but the process empowered and motivated me to start sharing my new found hope and experiences with others too. The result was my story site and blog (and the hundreds of email conversations I have had with vitiligo friends all over the world ever since).
You may be reading this and thinking you have been disappointed too many times by false hopes and treatments that didn't work. I have certainly felt that way in the past. The approach that eventually worked for me has helped a lot of other people too but I don't suppose it works for everyone. Effective vitiligo treatments are not a one-size-fits-all. I know this myself because I tried several therapies in the past, including PUVA, which is proven to help some people but made absolutely no difference to my vitiligo at all. But I take the view that enough of us have proved that vitiligo can be reversed and that we no longer have to believe those doctors who tell us nothing can be done. We no longer have to feel hopeless and helpless. We can be proactive now, without having to wait for a miracle cure to be invented. There are lots of things we can do right away, like learning as much as we can about how our skin produces pigment, what other health conditions we might have that could be contributing to our vitiligo, avoiding environmental triggers, improving our diet and trying safe treatments that have worked for others.
Finally, supporting each other and contributing to vitiligo groups and research are also ways of breaking free from the sense of helplessness that so often accompanies this skin disorder. Vitiligo research projects and support organisations around the world often ask for the participation of vitiligo sufferers and their families in helping to develop treatments or improve available support for patients. I mentioned one of these on this blog a few months ago. It was a UK based trial - the "Hi-Light Vitiligo Trial" - designed by the Centre of Evidence Based Dermatology at the University of Nottingham to test the effectiveness of home-based light therapy with hand-held UVB phototherapy units. The same team at Nottingham has also been asking for feedback from people with vitiligo, or carers of children with vitiligo, to find out more about their experiences of looking for information or treatment for the condition. This involves answering a survey which will be used to raise the profile of vitiligo amongst health professionals, particularly GPs. The findings will also help to form plans for advertising the findings of the HI-Light study in the future. So, if you live in the UK and would like to contribute to this survey, there is still time to participate by clicking here – but only if you are quick. The deadline is this Sunday 13th March.
plus my thoughts on ducks, country walks, ships and ecosystems!
Yes - you read the title of this blog post correctly. Read on, and all will become clear :)
I am very fortunate where I live, in a rural part of northern England, to have some lovely country walks right on my doorstep. I have always enjoyed walking because I love fresh air and beautiful scenery. I am also acutely aware of how important it is to stay fit and active if you want to keep chronic conditions like vitiligo and arthritis under control. Both of these health problems plagued me for most of my life and I have always suspected they were linked in some way. I just don't think that it was a coincidence that my arthritis was at its worst during the years when my #vitiligo was spreading fast; neither was it a fluke that my joint pain and stiffness diminished massively when my skin re-pigmented.
After several years of digging into the subject, I have come to believe that genetics and poor digestion lie at the root of both of these conditions. Since there is not much I can do about my genes (at least not unless or until a genetic cure for such disorders is developed), I like to focus on making the best lifestyle choices I can to support my overall health, in the knowledge that the human body has immense capacity to heal itself, given half a chance – as I have found out from personal experience.
A #holistic practitioner once told me that anyone with long-term, compromised health is a bit like a cargo ship on the ocean: if it is well maintained and loaded correctly it will stay afloat; but if you let it rust or weigh it down too heavily, there comes a point where it will start to sink below the water line. Because of this, a person with chronic disease must take care not to weigh their body down with too many of the things that might overload it (like inflammatory foods, poor nutrition, too little sleep, smoking, too much alcohol, etc.) These pieces of cargo might not pose a risk to a person in normal health because their body is more buoyant and bounces back more easily. But for someone with an autoimmune, or other chronic condition, there is a much finer line between floating and sinking.
I haven't always thought of my body as an ecosystem. But ever since I regained my pigment (and simultaneously started to get the arthritis under control) as a result of taking nutritional supplements, it has seemed entirely logical to me that if replacing deficient nutrition was able to heal my skin, it might also improve bone and soft tissue health, arthritis and any other chronic condition at the same time. It has also made me more aware that keeping fit and active every day is bound help maintain healthy circulation, digestion, elimination, muscle tone, etc. which, in turn, is bound to bring about further improvements, lifting the human ship a little further above the water line.
Anyway – back to the walking, which I find such a pleasurable part of leading a healthy lifestyle… I was admiring the views from the top of a nearby hill a couple of days ago when I noticed two pairs of ducks waddling across a field a few yards away from me. The sight was quite comical because, for one thing, there was no water anywhere around (just grass as far as you could see) and, for another, the two drakes were walking side by side and the two females were sauntering along together too. It looked for all the world as if they were two neighbourly couples out for a leisurely stroll and a sociable chat with their opposite number.
Always fascinated by pigmentation in nature, I was struck by how very different the male and female ducks' colouring and markings were but how identical to each other the two males and the two females appeared to be. I'm sure the ducks themselves have no problem telling which partner is theirs but, to us humans, one species and gender of duck all look pretty much alike. Humans, on the other hand, come in all shapes, sizes and colours. On the whole, we relish this wide variety on offer when it comes to playing those initial stages of the mating game that so often rely on outward appearance. (Yes, some gentlemen really do prefer blondes and some girls really do fall for tall, dark and handsome guys.) Sometimes opposites do attract, but then again sometimes we seek a partner who shares our physical characteristics. “Vive la différence” has acquired a broader meaning over the generations since the 1960's when western cultures and fashions began celebrating greater individuality.
And yet, there is still a primitive instinct in most of us that makes us fearful of straying too far from what is considered to be “the norm”. It is that desire to blend in, not to be too different, so as not to risk rejection by the rest of the ducks in the pond. Many of us, at some time in our lives, find ourselves feeling like the Ugly Duckling. Whether we are unusually tall, have a prominent birthmark, a nose we hate or a skin disorder like vitiligo, acne or psoriasis, the whole prospect of socialising, can be fraught with feelings of insecurity and dread. And never more so than when dating or searching for a significant other.
Which finally brings me to the TV part of this post. I am contacted from time to time by programme makers who are looking for people with vitiligo to feature in various documentaries. If you live in the UK, are single, over 18 and would like to raise awareness of vitiligo by taking part in a #TV-programme, please get in touch direct with the programme makers using the contact details on the flyer below. (That's telephone number 0207 290 0233 or email@example.com.) The series will follow single people who feel that their love lives have been affected by a medical or physical condition and as a result may not feel entirely comfortable with being open about their condition when they first meet people.
Looking back on my own single days, I hid my vitiligo so well in my teens and twenties that most people never knew about it and I now realise I had no reason to feel so anxious about how it might affect my love life. When I met my husband, he was amazed that I should feel so insecure about something that, as far as he was concerned, had zero relevance to his feelings for me. He found me beautiful then, and throughout the 30 odd years since - while my vitiligo spread – he still found me beautiful. Interestingly, now that the white patches are virtually gone, his view of me is still exactly the same. It just goes to show that ugliness can be a state of mind, whereas beauty truly is in the eye of the beholder.
My name is Caroline.