And how I have my skin to thank for my internet addiction!
Hardly a day goes by that I don't marvel at the way the internet has changed daily life for most people on the planet. It's hard to believe that it has only been two and a half decades since the World Wide Web (doesn't that sound quaint now?!) was invented. I'm sure I'm not the only one who struggles to remember a time when there was no such thing as going online, emailing, messaging, social media, internet shopping, mobile apps and, above all, endless googling on every topic under the sun. (Mind you, as a post menopausal woman, I struggle to remember lots of things!) I wouldn't mind betting that the majority of us would find it difficult to say which would be more inconvenient: an interruption to our water supply or to our internet provision! It seems that access to instant information “on tap” has, literally, become as essential to life as water.
I have noticed, though, that a lot of my contemporaries spend much less time online than I do (a few even choosing not to take part in the internet revolution at all, feeling that it all happened slightly too late for them). I suppose I have my #vitiligo to thank for being more internet savvy than most of my peers. Having grown up and lived almost half a century with little or no access to helpful information on my poorly-understood, never-talked-about, incurable and largely ignored skin condition called vitiligo, the advent of the internet was like finding Aladdin's Cave. Suddenly, I could ask any question I liked about it and get a whole bunch of answers in less time than it takes to say “there's no cure – go home and live with it”. This was wonderful, it IS wonderful – and it is getting better all the time as good advice, clinical research and social media support all become more accessible.
However, the availability of massive quantities of information about vitiligo comes with a downside – and the downside is: massive amounts of information about vitiligo. There are now such vast quantities of the stuff out there that it can be a tedious and time-consuming task finding exactly the right search terms and sifting through the mountains of results; and then it is not always easy to separate the reliable from the misleading or misinformed. For the past 6 years or so I have spent a tremendous amount of time researching everything I can find on the subject and I sometimes feel that the task is not too far removed from that of the international intelligence services, trying to keep ahead of the global terrorist threat: swamped with data and hard-pressed to distinguish what is relevant from what isn't. Having said all of that, I'm not complaining: I love researching - I admit I am addicted to it - and I love sharing what I find. But I still sometimes find myself thinking how much easier it would be for someone who is newly diagnosed with vitiligo to have a real, live person sitting next to them who has first-hand experience of having the condition and who would be willing just to talk through it.
This is the general approach I tried to adopt myself when I was asked earlier this year to write a #Vitiligo-Guide for Mind and Skin (an excellent charity I first came across a year ago) to offer some straightforward #advice to anyone who might be looking for guidance from someone who has been through what they are going through. I tried to include all the basic information I would have liked to have when I was first diagnosed but I also wanted to keep everything as simple as possible. The Guide covers the following points:
You can find the full text here but, in case you don't want to read the whole thing, I have copied the 10 #tips portion below and inserted some additional links that may provide useful further browsing ...
How I turned my bath tub into a skin-healing spa
No matter what your doctor may have told you, there are many effective treatments for #vitiligo. I used a combination of certain nutritional supplements and regular sun exposure to regain nearly all my lost pigment after 50 years of very extensive vitiligo. Others have had success with the same, or similar, approaches. Others still, have ignored diet and nutrition altogether (as do most doctors - shockingly, in my opinion) yet still manage to achieved good results using topical treatments and/or phototherapy, although the benefits of only treating the skin from the outside are often temporary because they do not address the underlying cause or causes.
Possibly the most famous vitiligo therapy in recent years, and the one with the highest level of documented success, is the #DeadSea treatment developed by Dr Karin Schallreuter, consisting of topical pseudocatalase, sun exposure and Dead Sea bathing. As far as I am aware (and please correct me if anyone knows otherwise) little or no nutritional strategy is included in her programme, which I think is a missed opportunity to equip patients with an additional means of sustaining their recovery in the long-term. Eating for optimum health and addressing any specific digestive issues that could have contributed to the development of vitiligo in the first place seems, to me, to be essential if improvements derived from topical therapies, UV therapy and climatotherapy are not to prove temporary.
On the other side of the coin though, it occurs to me that, in neglecting to use any topical creams or lotions whatsoever during my own repigmentation, I may equally have missed an opportunity to use every anti-vitiligo weapon at my disposal. And this realisation has led me to test various topical products over the past year or so while I have been researching the most helpful solutions for inclusion in my Vitiligo Store.
The first of these products to prove genuinely beneficial when I tried it on my remaining stubborn areas (parts of my hands and feet) was Vitix (which appears to work along the same lines as Dr Schallreuter's pseudocatalase formulation by delivering very powerful #catalase and SOD antioxidant protection direct to the skin to counteract the high levels of hydrogen peroxide known to accumulate in the skin of vitiligo sufferers). I can highly recommend this gel - from personal experience - for regular use on, and immediately around, vitiligo lesions and especially when used together with either sun exposure or narrowband UVB phototherapy.
The second topical product I chose was not even designed to treat vitiligo but has become an indispensable part of my daily life. You could say it is not so much topical as tropical...good quality coconut oil! I recommend this as a moisturiser for the entire body and face (as well as for a host of other uses) because I find it a safe, natural and affordable way to provide moisture and a significant level of every day antioxidant protection, as well as reducing the inflammation that can often occur with vitiligo.
My latest choice of every day solutions to help treat and manage vitiligo from the outside is one that takes us back to the subject of the Dead Sea "cure". The dermatological, and general, health benefits of the mineral-rich salts and mud found in the Dead Sea are legendary and form an important part of Dr Schallreuter's programme. Psoriasis, vitiligo and a wide range of other skin and musculoskeletal conditions have been treated there for thousands of years, and with dramatic and well documented success. So, whilst it may not be practical or affordable for everyone with these conditions to make regular visits to Israel or Jordan to float in the therapeutic waters (more's the pity!), the next best thing might be to create our own "pseudo-Dead Sea spa" at home, using products made from the active ingredients from that location... which is exactly what I have been doing for the past few weeks.
I have blogged a lot in the past on the subject of whether vitiligo is best treated from the outside or the inside and have come to the realisation that both approaches - used simultaneously - seem to achieve the most dramatic and long-term results. Interestingly, Dead Sea minerals could be said to work in both ways at once because soaking in a warm bath containing these therapeutic salts (not in hot water, but just a couple of degrees warmer than blood temperature) is a very effective way to detoxify and de-stress at the same time as drawing the beneficial minerals into your body. And given that so many people with vitiligo and other chronic conditions suffer from poor digestion and malabsorption of nutrients, taking these minerals in by means of regular salt baths may actually be more effective than swallowing them in supplement form.
So, I am now well into my new routine of adding Dead Sea salts to my bath water at least 3 times a week and have noticed how much smoother and better moisturised my skin feels. Already, it seems to be less prone to itching and irritation than it used to be. And I can report two additional bonuses that I have enjoyed so far: one is that my arthritic hip and fibromyalgia aches and pains have eased considerably (which is extremely good news, given that the chilly, wet weather we are having in the UK at the moment usually makes these worse) and the other is that, after every Dead Sea Salt bath I take, I get THE best night's sleep... zzzzzzzzzzzzz
UV skin therapy is nothing new
Light therapy is not a new treatment by any means. In fact it is as old as mankind – or should I say as old as animal kind. You only have to watch how your pets gravitate towards all the sunniest spots in the house on a fine day to be reminded that the sun sustains all life on the planet and that all creatures tend to experience a sense of well-being when they feel its warmth soaking into their skin, as the delightful photo above demonstrates so well!
The sensation of profound relaxation, freedom and harmony with nature that sunbathing induces is something I missed out on for most of my adult life while my vitiligo was at its worst. During that time I instinctively avoided all situations that could possibly involve being seen with my blotchy skin exposed to the curious gaze of others. I became an envious spectator each summer when everyone around me would head for the park or the beach dressed in shorts and t-shirt, sundress or bikini. An all-consuming fear of revealing my vitiligo to others (and being reminded of it myself) was the main reason I kept out of the sun. But I was also afraid of getting sunburn on my white patches because I had listened to the advice that was typically dished out to vitiligo patients regarding sun exposure - which was to avoid it due to the risk of developing cancer. This advice has since changed somewhat as doctors have realised that vitiligo sufferers actually have a lower risk of developing skin cancer than the rest of the population and that the vitamin D deficiency that is characteristic of vitiligo actually calls for more sun exposure, not less. Add to this the fact that #UVtherapy is one of the most effective treatments for vitiligo, and avoiding the sun suddenly doesn't seem to make a whole lot of sense.
#Narrowband UVB therapy is now the number one treatment of choice for many vitiligo and psoriasis patients, due to its high success rate as compared to other options. But who first discovered this treatment, and how? Well, read on because it is a fascinating story...
Treatment with sunlight, or "heliotherapy" (from the Greek sun god Helios), was used for centuries in the management of skin diseases. More than 3500 years ago, ancient Egyptian and Indian healers used an early form of PUVA involving the ingestion of certain skin-sensitising plant extracts or seeds in conjunction with sunlight for treating "leucoderma" (#vitiligo).
But it was the late 19th and early 20th century that was the seminal period in the international development of modern, medical UV therapy. At the same time as the legendary John Harvey Kellogg (of cornflakes fame) was experimenting with therapeutic sunbathing at his revolutionary holistic sanitorium in America, Dr. Auguste Rollier (known as "The Sun Doctor") was busy opening the world’s first Sun Clinics 5,000 feet above sea level in his native Swiss Alps, whilst French naturist Dr Albert Monteuuis was prescribing heliotherapy at his santatorium on the Côte d’Azur as a natural treatment for the benefit of all types of chronic illness.
As natural sunlight is not available everywhere and at all times of the year, artificial alternatives were also being developed at this time that could mimic the sun’s healing effects. This really marked the birth of modern #phototherapy, as we know it. The most famous pioneer of this technology was Niels Ryberg Finsen, originally from the Faroe Islands, who worked as a scientist in Copenhagen and whose own poor health (he suffered from Niemann–Pick disease) led him to investigate the therapeutic effects of sunbathing. He developed a new theory of phototherapy, in which certain wavelengths of light can have beneficial medical effects. He developed a so-called "chemical rays" lamp (the "Finsen lamp" below) whose UV rays could be concentrated onto the most affected parts of a patient’s body. He used this to treat tuberculosis patients and in 1903 he received a Nobel Prize for his therapeutic results with UV irradiation in lupus vulgaris.
In 1900, French electrical engineer, Gustave Trouvé miniaturised Finsen’s machine with a series of portable light radiators to heal skin diseases which marked another step towards the phototherapy technology of today.
Throughout the middle part of the 20th century the methods of these early phototherapy pioneers were adapted and built upon with particular emphasis on psoriasis treatment, which usually included the use of oral and topical steroids, and by the 1970s UVA phototherapy plus light-sensitising medication (PUVA) had become the gold standard treatment for both psoriasis and vitiligo patients. Whilst PUVA proved more effective than previous treatments it carried increased risk of sunburn, premature ageing and skin cancer and the medication used could cause other harmful side effects, including liver damage.
For all its shortcomings, PUVA was a popular treatment for many chronic skin conditions and its development led to the discovery of UVB as a more effective therapy, even when used without the addition of photosensitising medication. By the late 1970s broadband UVB was routinely being used to treat psoriasis and pruritis, followed, in 1988, by the introduction of narrowband UVB, a trend which started in Europe and then gained popularity in the USA during the 1990s.
The application of narrowband UVB to vitiligo specifically came nearly a decade later in 1997 when a pivotal study (Wiskemann 1978; Westerhof and Nieuweboer-Krobotova, 1997) demonstrated that a much higher percentage (67% vs. 46%) of patients undergoing narrowband UVB had repigmentation of vitiligo patches than those who underwent PUVA therapy. Since then, the use of fluorescent bulbs (Phillips model TL-01) that deliver narrowband UVB in the range of 310-315 nm has revolutionised clinical treatment as well as making home phototherapy devices an option. Narrowband UVB for vitiligo has become the new gold standard since it produces better and faster results than previous technologies, is well tolerated by most patients and carries very low risk.
In simple terms, the reason that narrowband UBV has the advantage over previous technologies and became the modern phototherapy treatment of choice is that it stabilises active vitiligo and stimulates new pigment better than other bandwidths and, when administered correctly, does it faster than the time it takes for the skin to burn.
This, I am sure, will not be the end of the story. New technological developments in UV therapy continue to emerge, excimer laser treatment being one example. And in another, very practical, example of ongoing research into phototherapy for vitiligo, the Centre of Evidence Based Dermatology at the University of Nottingham is currently recruiting 440 people with vitiligo, aged 5 years and over, to take part in the "HI-Light Vitiligo Trial", designed to test the effectiveness of home-based light therapy with hand-held units and topical steroids. The trial will no doubt be a valuable contribution to the sum of knowledge on vitiligo and its treatment (and hopefully benefit many of the participants at the same time). But it is also exciting to consider that, by the time some of the younger participants have reached adulthood, phototherapy - and vitiligo treatment as a whole - will have moved on even further and may even have produced that long-awaited and ultimate breakthrough: a permanent, guaranteed, safe and effective vitiligo cure.
As a child growing up in the UK during the 1960s and '70s I didn't come across #coconuts very often. The mysterious, hairy fruit (or drupe to be more precise) was generally only to be found at fairground sideshows where the idea was to knock one off a stand by throwing an impossibly small ball at it from an unreasonably long distance away. Someone in our family must have had better aim than me though, because I do have a vague memory of winning the exotic prize on at least one occasion and being desperately disappointed when – after much whacking with a hammer to split it open – I finally sampled the rare and tempting flesh, only to discover it tasted nothing like the pink and white striped coconut ice we sometimes used to buy at the sweet shop on the corner.
Well, a lot of water (some of it of the coconut variety) has passed under the bridge since then and it seems that the world – UK included – has gone completely coco-nuts! In a matter of three or four decades the coconut has gone from being best known for the Bounty Bar (or possibly, in desiccated form, as something to be sprinkled over a Vesta Beef Curry in a hopeless attempt to make it taste tropical) to being a rising star of health food shops, diet and fitness blogs and even supermarket shelves. Coconut water, milk, cream and even coconut nectar have all risen to prominence as healthy and versatile every day cooking ingredients, especially for those following low-carb, anti- allergy and paleo diets. But the brightest star in the firmament has to be coconut oil.
#CoconutOil is 100% fat (plant fat, of course) and so its many health benefits were largely overlooked for years in a mistaken belief that its high saturated fat content made it an unhealthy food choice. However, the structure of fat in coconut oil differs crucially from other saturated fats often found in animal products (which are typically comprised of long-chain fatty acids). The fat in coconuts contains an unusually high amount of medium-chain fatty acids or triglycerides, which are now known to provide protection against cardiovascular disease, diabetes and weight gain. Clinical and anecdotal evidence also suggests it may slow the development of Alzheimer's disease. In addition, its exceptional moisturising properties have made it a popular choice as a skin care and personal care ingredient. And, if that wasn't reason enough for its gain in popularity, it turns out that coconut oil possesses antiviral, antibacterial, and antifungal properties too.
When I first picked up on the buzz surrounding this now ubiquitous product a couple of years ago, I started to experiment with its different uses and wrote my first blog post on the subject not long after. Since then I have become increasingly impressed with - and more and more reliant on – coconut oil for a host of reasons. The most important of these is that it has proven to be the answer to many of my vitiligo-related needs. For example, I had previously spent a lot of time looking for the perfect moisturiser for those of us with problem skin (sensitive skin, #vitiligo and other autoimmune conditions) in the knowledge that most commercial lotions and potions contain a cocktail of chemical ingredients that could make matters much worse, but I never found the perfect product. Some I have found come close but very few are completely free from potential irritants. Pure, quality coconut oil, on the other hand, has all the benefits of an excellent moisturiser with none of the "nasties". And, I have noticed, it is the main ingredient in many of the topical vitiligo treatments available on the internet, yet costs a fraction of the price.
The longer I experiment with coconut oil, the more I ask myself, "Is there anything this stuff can't do?" Contrary to this fun quote I spotted on Pinterest, it seems to be one multitasking superstar that actually does twenty times as much as any other product and does it ten times better!
_These are some of the ways coconut oil can be used:
A vitiligo friend also recently passed on a tip online that she had better results from taking her Boost capsules with some coconut oil, saying that this was what seemed to kick-start her current repigmentation.
Not surprisingly, the clutter that used to greet me when I looked in my bathroom cabinet has rapidly dwindled as I have used up (or, in many cases, ditched) my old task-specific and chemical-laden products and replaced them with a single tub of you-know-what! Not only am I much happier about the health benefits involved in this process but it is also saving me a ton of money. But, if you are considering following suit, it is worth bearing in mind that, depending on the way in which they are grown, harvested and processed, not all coconut oils are created equal and that the quality and health benefits will usually be more or less in direct proportion to the price. A good rule of thumb is to choose an a virgin or extra virgin cold-pressed and preferably organic product. My own favourite at the moment is a Fair Trade one from Tiana.
If only I had known, as a child, what an exceptionally versatile and health-giving thing that exotic, hairy, inanimate target in the fairground sideshow really was, I might have treated it with a bit more respect (or maybe practised my aim so I could win a few more). Suffice to say that, now that I have been educated in the mysterious and wonderful ways of the coconut, I have nothing but the greatest reverence for it. And if I am ever fortunate enough to be stranded on an uninhabited desert island, I know that as long as there is at least one coconut palm growing on it, I will be just fine :)
My name is Caroline.