Thanks to everyone who has been willing to share their re-pigmentation stories
This month's post is just a quick one, as so many people are on their holidays at the moment (hopefully, taking a break from their gadgets) and because I shall also be away for a couple of weeks myself enjoying some extra sunshine.
Not that there has been any shortage of fabulous weather here this summer. Being British, temperatures in the high 20s and even mid-30s have meant that our nation's favourite hobby (talking about the weather) has occupied even more of our time and attention than usual over the past several months. Comments like "If you think it's hot here, you should have been in such-and-such a place last week. Now THAT was hot!" are to be heard all over the country and much of the normally pasty-faced portion of our population that owe their colouring to an Anglo-saxon heritage have been hanging out in pavement cafes and lounging on beaches at every opportunity, showing off their deep Mediterranean tan and feeling ever-so-European in spite of all the talk of Brexit.
Not everyone shares a love of sunny weather though. Long, hot summers can be a real endurance test for anyone suffering from vitiligo and the question of "should I or shouldn't I expose my skin to the sun?" can be a difficult one, not just due to possible embarrassment at revealing those white patches, but also because of the risk of burning them. But the fact is that it takes UV light to stimulate the body's tanning process and, as long as (in my opinion and in my personal experience) you also ensure you are getting the right nutrition for the purpose, sunshine can be the best therapy of all for vitiligo.
One thing is for sure, it's harder to ignore your vitiligo when the weather is hot and sunny. And this summer I have been receiving a much higher number of emails on the subject of how to cope with it in these conditions. But I'm happy to say that I have also received a higher number than ever of good news stories from those of you who have been re-gaining lost pigment and I am grateful to everyone who has offered to share their story or their photos on the site in order to give hope to all the vitiligo sufferers out there who have been told that the condition is hopeless or irreversible. I am constantly adding to the testimonials page on this site whenever I get the time and obviously only with the consent of each individual. I understand perfectly that not everyone wants to have their pictures published, even if they are mainly anonymous. But I would like to publicly thank everyone who has taken the time to contact me with their #vitiligo-success-stories and encouraging comments over the years (not just this summer) and, in particular, to thank those of you who have specifically asked me to share your feedback, knowing how uplifting this is likely to be for others. I look forward to receiving, and sharing, a lot more as time goes by.
Vitiligo on TV makeover show
Earlier this month I watched Katie Piper’s Face to Face, a #TV documentary on Britain’s Channel 4 presented by a former model, in which she invited women with a variety of face-altering skin conditions to have a makeover. What made this programme so different from all the other makeover shows I have ever seen was that Katie herself has severe facial scars which she sustained several years ago when she was the victim of an acid attack. And, unbeknown to her guests, each of the make-up artists on the show shared the same facial condition as the person they were making up. The whole show was absorbing but I was, of course, particularly interested in the #vitiligo-makeover.
The big reveal
The most dramatic twist of all was "reverse big reveal” at the end of each makeover when, to the surprise of the person sitting in the make-up chair, the artist wiped off their own cosmetics to reveal that they too had the same condition. The effect of this was both moving and uplifting because it was so unexpected and, in a strange way, so intimate. This was definitely not your average makeover show (although there were some useful tips for anyone interested in cosmetics and camouflage) and it was certainly not about glamorous professionals helping to transform poor, needy victims by teaching them to hide their scars. It did show that make-up is a potentially empowering, but completely personal, choice for anyone whose face is different from the accepted norm. But, much more importantly, it showed the power of shared experience and mutual compassion between the invited guests and their make-up artists (some of whom were self-taught, rather than professionals). Seeing their reactions, I was reminded of the tremendous power of mutual support. Because, no matter how kind and well-intentioned a person may be, it takes someone who has been through a face-altering experience to truly understand how this makes a person feel.
One shared experience: two different ways of coping
The show also highlighted the different ways in which individuals cope with their skin condition. Rochelle, the guest with vitiligo, had come to terms so completely with her two-tone skin that she actually found the cosmetic transformation into airbrushed perfection rather unnerving, whereas Nancy, the artist who performed the makeover, relies on cosmetic camouflage to give her the confidence she needs each day to feel comfortable in her own skin. I found myself in awe of Rochelle's attitude but I completely related to Nancy's because my reaction to having vitiligo had always been to hide it at all costs and every time I removed my make-up and looked in the mirror it use to make me miserable. For me, the most powerful part of their interaction was seeing both of them instantly empathise with the other, whilst accepting that they each had completely different, yet equally valid, ways of coping on a daily basis.
Exposure and coverage
It is good to see vitiligo being shown and discussed in such an open and constructive way on mainstream TV. I am guessing that this will have been the first time that many viewers have ever seen or heard of vitiligo. I have always enjoyed a good play on words, so it strikes me as strangely fitting that a condition that presents each individual with a choice between exposure or (cosmetic) coverage should be in such need of both media exposure and media coverage! There is still a shockingly poor level of awareness and understanding of it, compared to other skin conditions. This widespread ignorance is one of the reasons so many people choose to cover their patches up (which, of course, helps to perpetuate that ignorance). After all, even if you are not particularly self-conscious, who wants to keep having to explain to people what the white spots are? Isn’t it just simpler to hide them and pretend they aren’t there? That’s how I used to feel before I re-gained my lost pigment and, I have to admit that it is probably how I would still feel today. It was my coping strategy then and I don’t suppose I would be much different now. But I do think that the more exposure vitiligo has in the media, the easier it will become for each person to decide for themselves, with no pressure from others, whether they want to cover up or not.
It seems to me that Katie Piper herself has developed a wonderfully positive and balanced attitude towards the role of make-up for those with skin imperfections. At the start of the show, she admits that, like anyone else, she worries about her appearance but, on the subject of make-up, she says she has come to see it as a friend she can call upon when she needs it but never be dependent on.
Having watched the show, I was prompted to find out more about its inspirational host and what impressed me the most when I read Katie's story was the fact that she has clearly emerged from her own utterly horrifying ordeal a stronger and more successful person with a heartfelt desire to use her painful experiences to help others overcome their physical, and emotional scars too.
If you did not see the show it is available to view on this link:
as effective therapy for vitiligo
There was a time when any #vitiligo patient who dared mention the word “vitamin” in the presence of their doctor would have earned themselves a patronising smirk and a dismissive assertion that “no evidence exists to show #nutritional-supplementation has any effect on the condition whatsoever”. Sadly, that time is not yet firmly in the past. But I fervently hope, and believe, that an excellent new publication called “The Use of Vitamin Therapy for the Treatment of Vitiligo” will help to consign this kind of reaction to history.
The woeful ignorance of most mainstream doctors on the subject of nutritional therapy for vitiligo was clearly a key motivation for the book's author, Audrey VanStockum @Recouleur. As she explains in her preface, she suffered with vitiligo and psoriasis for years, was misdiagnosed for both conditions and visited a total of 23 clinicians over a 14 year period in her search for answers to her skin problems. She realised that her negative experience highlighted “a paucity of information and specialized training” and it puzzled her that so few healthcare providers seemed to have any knowledge of effective vitiligo treatments, even though published research on the subject - dating as far back as 1945 - was openly available. Her frustration at this state of affairs led her to start doing her own research into the subject of nutritional therapy, trying various vitamin and mineral supplements herself and observing her responses. Her wide reading on the subject and experiments in self-treatment resulted in some re-pigmentation and, ultimately to the creation of her own dietary supplement called Recouleur.
Audrey's expertise in the area of nutritional therapy is a wonderful example of how frustration can sometimes be the mother of invention. The idea that we need to take responsibility for our own vitiligo treatment is a familiar one for many of us because we too have repeatedly met the same brick walls when trying to find constructive help from the medical community. Like Audrey, some of us will have wondered why our doctors have apparently never come across any of the research that we ourselves may have seen whilst trawling the internet for solutions and why it is that they are so resistant to the suggestion that nutritional therapy should be prescribed for vitiligo. In fact, I have sometimes advised vitiligo friends to avoid the subject of food and supplementation completely when visiting their doctor because I could predict the likely reaction and did not want anyone to rain on their parade. My view was that the proof of the pudding was in the re-pigmentation that people were achieving through supplementation and that trying to persuade the medical profession to recognise these successes was futile. But that was because it was not a straightforward matter to have the relevant research at one's fingertips during the typical doctor-patient consultation. Well, that was before Audrey's new publication, which – in addition to its main aim of informing vitiligo sufferers themselves - could also easily be used as a way of presenting their doctors with the nutritional facts, all in one well researched and clearly written 40-page booklet.
One of the strengths of “The Use of Vitamin Therapy for the treatment of Vitiligo” is, in my opinion, the fact that it strikes the perfect balance between scientific detail and simple explanation so that it makes suitable reading for anyone, regardless of whether they have a scientific background or not – and regardless of their prior understanding of vitiligo. The author assumes nil knowledge of the subject, explaining what vitiligo is and the processes thought to be involved in its development. She then reviews key vitamins and minerals used by the body to produce skin pigment and describes the role played by each one, as well as the adverse effects of deficiencies. And, crucially, she backs up all of the information with relevant research studies. As I read through the book, I found references that I had not come across before, as well as some that I had seen but had since lost sight of in the vastness of the internet. So, it was extremely useful to have such a comprehensive overview of the subject and its associated literature all in one place and set out in such a clear and concise way.
I also found myself saying (aloud) “YES!!!” when I read the chapter on what Audrey has termed “The Three-Prong Approach” to vitiligo treatment because her view on this makes total sense and resonates with my own thoughts exactly. This approach states that that the most effective vitiligo therapies involve one component from each of the following categories:
In this way, the condition is being addressed from the inside out as well as the outside in and is benefiting from UV exposure (nature's way of stimulating pigment) as well as active, therapeutic ingredients (to treat the condition).
In my experience, most doctors only ever try to treat vitiligo “from the outside in” (i.e. they might use one, or both, of categories 2 and 3). Many do not even advocate any treatment at all because they claim that improvements are minimal and, at best, temporary. However, I am convinced that this is because they omit category number 1. They neglect to include nutritional therapy in their treatments. It stands to reason that external therapies may help treat skin symptoms but only internal ones can hope to address the root cause and prevent symptoms from recurring over the longer term.
The medical profession has been slow to pick up on the findings of research done as long ago as the 1930s and 1940s that clearly pointed to digestive deficiencies as being at the root of vitiligo. Audrey VanStockum draws on the findings of this research, further supported by anecdotal evidence of vitiligo sufferers whose pigmentation improved with improvements to their diet.
There is no question in my mind that correct nutritional #therapy can reverse vitiligo. Audrey and countless others (including myself) are living proof of the fact. But our modern health systems are heavily biased toward pharmaceutical and surgical solutions, no doubt because these are the areas of research that tend to receive the most funding. Concepts of healthy eating and nutritional supplementation as a means of restoring health receive very little serious attention and therefore do not produce the amounts of clinical research data demanded nowadays by the medical establishment. This is frustrating but perhaps it is understandable. Sophisticated drugs, stem-cell therapies and ground-breaking surgical procedures are needed for all kinds of life-threatening conditions that afflict the human race and they are super-expensive to develop. So this is where the funding tends to go. (And, if we want to be cynical about it, these are the treatments that can be patented and become lucrative for thedrug companies and professionals who administer them. Whereas foods and nutritional supplements already exist and are widely available.) What is lacking is not simply new clinical data to support nutritional therapies but an awareness and acknowledgement on the part of doctors that this approach is sometimes the most effective way of treating certain conditions, and that one of those conditions is vitiligo. And, to be fair, there is another requirement, if things are going to change: and that is individual patient responsibility not to be over-reliant for their own state of health on the men and women in white coats. We need to take charge of our own recovery.
In the final paragraphs of the book, Audrey puts all of this in a nutshell: she says, “First, patients need to be their own health advocates and seek solutions for treatable conditions instead of accepting any answers physicians provide, such as “Nothing can be done,” which is said all too frequently to vitiligo patients. Second, physicians need to be open to complementary therapies for treating highly challenging diseases that do not always respond to conventional treatments. Third, more robust studies are needed to analyze the role of vitamins in treating vitiligo; and fourth, dermatological residencies should include a tract on the role of nutrition.”
Obviously, there is far too much detailed information in this excellent publication for me to do more than scrape the surface in this blog. So, I would recommend it as essential reading for anyone, from any background (scientific or not) who wants to understand the relationship between nutrition and vitiligo and how nutritional therapy can help to treat this complex and frustrating condition.
Congratulations, Audrey - and thank you for sharing your knowledge!
... and a Vitix update
I have two topics to share this week and they are linked, so I thought I'd give you them both in the one post. I'll begin with a valuable lesson I learned a few weeks ago. It's one I wasn't thrilled about at the time but I am glad to be able to share it with you, especially if it helps another person avoid making the same mistake as I did.
I am always learning new things about #vitiligo and often I am simply reminded of facts I had forgotten or ignored. The latest of these is that vitiligo - like so many other skin conditions with no definitive cure - can be treated very successfully, even to the point where the symptoms (white patches) completely disappear. But it is a disorder that will continue to produce symptoms in those individuals who are genetically prone to develop it unless it is managed properly. Anyone who suffers from psoriasis will be familiar with this concept. But, for some reason, most people with vitiligo don't think about their skin in the same way, perhaps because most dermatologists don't talk about vitiligo in terms of being a condition that can be controlled. And yet I know, from personal experience, that it is possible to achieve almost total recovery from severe, long-term vitiligo (and therefore I can only assume that it is possible to achieve 100% recovery in cases less severe and less long-term than mine).
For anyone who hasn't read the details of my repigmentation, I should just explain that, after 50 years with the condition, most of my 80% depigmented skin started to return to its natural colour using just nutritional supplements and sunshine during the summer of 2010. A course of narrowband UVB at my local hospital then replaced the sunshine element of this treatment over the winter months, which further improved the density and evenness of the new pigment. To summarise, about 18 months after starting the nutritional programme plus light exposure I had gone from 80% pure white to 98% normal skin colour. (You can see the photos by clicking here.)
I remember the medical staff warning me that results from UVB treatment were usually temporary. I wasn't too worried about that because I knew that nutrition had been the main reason for my recovery. So, as long as I carried on with that, I was confident that I would not suffer any setbacks. And, sure enough, five years later I had not lost any more pigment - in fact the improvements had subtly continued ever since.
But I was recently reminded that recovery is not the same as cure and just because your symptoms have subsided doesn't mean you aren't still vulnerable to triggers, especially if you become complacent about continuing to do the things that helped you to recover in the first place. I attribute my long-term results very largely to the fact that, in addition to taking at least one large dose every day of the super-green food Five a Day+V, I have also taken occasional top-up courses of the tanning supplement Boost. (I took Boost every single day during my repigmentation but then dropped down to a maintenance programme). And yet I was lulled into a false sense of security this year because of the disappointing summer we've had in our corner of the UK and didn't top up with Boost before grabbing as much sunshine as I could, whenever the opportunity presented itself. So, ignoring the fact that daily doses of Boost and regular, moderate sun exposure had been a crucial part of my original repigmentation, I committed the double crime of staying in the summer sun for too long on a very irregular basis. Basically, I grabbed what little sunbathing time I could, for as long as I could, allowing myself to burn – and all without supplying my body with the vitamins and minerals it needed to produce melanin. My stupid fault – and this was the result...
Luckily I only caught the sunburn on the bony part of my neckline and it didn't exactly cause new vitiligo patches, as such, but when the sunburn subsided, clumps of dark freckles had bunched together in places, as you can see, and left the rest looking more pink than tan: a very different picture from the even pigmentation I had managed to maintain before the sunburn (see the image the top of this post).
I was obviously not thrilled with this. But I know it was my own fault and it was genuinely a valuable experience which I do not intend to repeat. It reminded me that the key to using UV rays to trigger healthy pigment is to get just enough sun (or UVB) exposure to turn the skin slightly pink but not red and to do this on a regular basis – every other day, ideally – whilst supplying your body with sufficient nutrients for the job.
So, now on to part two of this post! Apart from teaching me a valuable lesson, my sunburn gave me an ideal opportunity to continue testing one of the products I selected for Vitiligo Store. Vitix is, as far as I know, the only non-prescription, topical repigmentation treatment that has sound science and clinical evidence behind it. I blogged my first impressions on using it (and its partner product Viticolor) back in May and promised to update you after a few months.
My initial plan was to try it on my hands and feet which were the only remaining areas of my body that had never fully repigmented five years ago. By that stage they were just very lightly coloured all over and had islands of freckles on the areas containing hair follicles (see below) and they have not improved very much since then.
The nurses in the phototherapy unit had told me that hands and feet hardly ever regain their pigment. But, since these areas are known to be the last to respond, I now wonder if they just needed a longer course of UVB treatment than the hospital was allowed to give. In any case, I concentrated the Vitix trial on my hands first: I decided that if I saw improvement in my hands (reportedly the second most difficult part of the body to repigment) I would then include my feet (the most difficult) after that. After about four weeks I started to see very tiny dots of darker pigment appearing on the pale sections of my hands. The picture below shows an example running from the base of my thumb towards my wrist.
Whilst this was encouraging, I was aware that to test a product on such a notoriously difficult part of the body might not be entirely fair. So, in a way, my sunburn and subsequent patchily pigmented neckline provided a convenient site for an additional trial. I used a combination of moderate sun exposure (when it was available) and a hand-held UVB unit when the weather was dull and applied Vitix once a day. (I have also learned my lesson and started a top-up course of Boost, whilst continuing with the daily green food as always.) The improvement so far in just two weeks can be seen below.
The science behind Vitix, coupled with the results I am seeing, are quite impressive and so I would certainly recommend it to anyone who wants to pull out all the stops in treating their vitiligo because it does appear to support from the outside what the nutritional supplements are doing from the inside.
What I have learned – all over again – is that vitiligo can be controlled and that UV rays are just a trigger. If you create a friendly environment on the inside and the outside of your body, sensible use of UV exposure can trigger healthy pigmentation. But equally, if you neglect to create the right environment and you overdo the exposure, UV rays will trigger the opposite response. So I hope my mistake and my explanation of what I believe to be behind the whole process will be helpful to you if you are trying to rid yourself of the symptoms of vitiligo and keep them at bay.
Finally, many thanks to everyone who read last week's post and took up my invitation to visit Vitiligo Store for the first time. I do hope you liked what you saw and that you will feel free to let me know if you have any ideas as to what additional products you'd like to see there in the future as I add to the range. (But please don't suggest anything too wacky - like frogspawn body lotion or cardboard underwear - because I have committed to testing all the products myself before considering them for inclusion on the site. So I reserve the right not to accept every suggestion and definitely not to publish pictures of the testing process if the result would be too embarrassing!)
... paints a thousand words
It has been five years since I first shared my #vitiligo success story on the internet. I didn't share it because I necessarily expected the same approach to work for everyone, but because I knew that many vitiligo sufferers feel helpless and hopeless – and their despair is only made worse by a medical profession that, by and large, tells them to go home and forget about it because there is no cure. I wanted others to know that it is always too soon to give up hope of getting your natural skin colour back, if that's what you want to do. And I wanted them to know that, if I had found something that worked for me, it might well work for them too, but that – if it didn't – then something else probably would… but only if you keep searching and trying. So my message is to keep on being proactive.
Now, many website visitors, blog posts and email conversations later, I want to reinforce my message by making it clear that many others have indeed tried the same approach as me and had success. Over the past five years I have received, and replied to, hundreds of emails from vitiligo contacts all over the world. Many of them have tried exactly the same nutritional programme as me and some of those have been kind enough to stay in touch and keep me up to date with their progress.
I've been aware for some time now that I ought to share some of these experiences but had never got myself sufficiently organised to ask the individuals concerned if they would be happy for me to publish their comments. I shall be making a point of doing this in future and, in the meantime, would like to start with one very recent and heartwarming example.
A few days ago, a lovely and courageous lady called Sylvie, from Halesowen, sent me a glowing progress report, along with the "before and after" #vitiligophotos you see at the top of this post. When I emailed her back, asking if she would mind my sharing her news as I thought it might encourage others, she generously replied:
Yes of course you can use anything you like that I send to you, I am also keen on sharing my good news around to others who a suffering with vitiligo. I hope it gives others the confidence to give it it a go because it works!!
We had been corresponding since she started taking the supplements in June this year and it was obvious from her emails that she was going through the same sort of ups and downs that most of us experience when we hardly dare to hope that something will work and are disappointed when results are not as forthcoming as we'd wish. In addition to this, she was also under immense and ongoing stress as the sole carer for her sick husband. So she was in sore need of something to cheer her up, but at the same time, she was aware that stress can have an adverse effect on pigment loss and wondered, a few weeks into her supplementation, whether she was wasting her time trying to reverse her 40 year old vitiligo.
I was going to pull a few relevant sentences out of her emails but I think it will be more helpful to include the whole of her end of our correspondence as it really communicates the highs and lows that can accompany any attempt at defeating this condition and I am certain that it will strike a chord with many of you. But, above all, I think it demonstrates that everything can change in just a few weeks and that, if getting your skin colour back is important to you, it is worth persevering.
1st July 2015
Hi Caroline, a little update - I have been taking my boost and 5 a day for 2 weeks almost now, my problem comes when getting in the sun !! It's been years since I exposed my patchy body to the sunlight!! Nevertheless I have done in the hope of repigmenting like yourself. My problem is that my ordinary skin goes brown and my white patches have gone a bit pink, I look soooooo much worse now the patches stand out even more. I dealt with it before by letting it die down by keeping totally out of the sun and using factor 50 on hands and feet if exposed. How did u cope with this embarrassing ugly stage?. I have looked on Internet and sent for a small uvb light so that I can do a bit at a time , I will go for it completely if I get any sign of freckles but at the mo I feel a bit down about it standing out so much after being in the sun!!!! Any help and advise would be gratefully received, Sylvie.
17th July 2015
Hi Caroline, I am still persevering with my boost and 5 a day! Alas I have no repigmenting so far. Can't help but feel a little disappointed! . Do you think I should stay with it or am I a lost cause ha ha. I wonder sometimes if stress plays a part in this condition, my husband is terminally ill and I have been his sole carer for almost 3 years. However I have had vitiligo for 40 years now , so can't really put the blame on that. I am 60 this September and feel that this is my last ditch attempt to rid myself of this desease, do you honestly think I have a chance? . Sylvie
6th August 2015
Hi Caroline, IT'S WORKING !!! I have tiny little brown spots coming on my one arm!! I am delighted! ! .
I can't tell you how relieved I am, in this very difficult time with my husband being so poorly this is just what I needed to cheer me up. I am so glad I read your blog and followed your advice, I just wish I had seen it sooner, ha ha ha.
Thankyou for helping me to keep the faith when I lost hope , it's going to pay off now I hope.
So!! what happens next? am I to expect that it will all come back in time or will some of the patches stay? My hands and feet haven't got any little spots on , it just seems to be my left arm ha ha.
Thankyou again for your understanding, and reading these e mails from me, and answering so quickly I really have appreciated it and it's kept me going.
22 Aug 2015
Hi Caroline, I thought I would send you some before and afters of my arm ha ha. It's coming thick and fast now, I am getting good results all over exept feet and hands and a few odd places. Legs are coming slowly but a definately improvement, so all in all I reckon that if it keeps up this rate I may be able to wear a short sleeved top by next summer! Just hope it doesn't slow down to much . This is all down to you and your hard work, I still can't thank you enough :) :) xx
I want to end this post by thanking Sylvie for taking the time to keep in touch and for allowing me to share her emails and photos with you. She and I both hope that her experience will encourage others to keep their hopes of recovery alive. I wish her a very speedy and ongoing repigmentation and look forward to hearing more good news from her soon.
[See Sylvie's latest update and other success stories on my new Testimonials page.]
But natural self-help solutions are my choice until then
I was recently asked by a vitiligo friend on Facebook if I had heard of the drug #Tofacitinib and what did I know about it. I told him that what I had heard made me optimistic that research into definitive vitiligo cures was making significant progress but that we will probably have to wait a few more years until safe medicines have been developed and tested thoroughly. So I decided to elaborate on this here for anyone else who might find the information useful.
I mentioned this drug, in passing, in another post a few weeks ago. But, for those of you who may not have spotted the story at the time, Tofacitinib (brand named Xeljanz) is typically used to treat rheumatoid arthritis. Researchers found that it is also successful in treating alopecia areata (an autoimmune condition that results in hair loss).
Based on this discovery, dermatologists at Yale School of Medicine anticipated that the drug might also be effective against #vitiligo (which, like #rheumatoid arthritis and #alopecia areata, is classified as an autoimmune disease) and tested it on one patient, who responded very well. The patient in question, whose vitiligo almost totally disappeared within the space of 5 months, was reported to have suffered no ill effects from taking the drug. This is obviously encouraging, especially as her hands - an area of the body which is typically difficult to repigment - responded so well. Naturally, this successful result hit the headlines and caused some excitement among the vitiligo community.
Every stride forward in vitiligo research is cause for celebration, as far as I'm concerned. But the Yale researchers were at pains to point out that their results were based on a sample of one patient only and that a lot more studies need to be done on Tofacitinib before the long-term effects of taking it are known, especially since it is the first of a whole new class of drugs.
It's also worth bearing in mind that all drugs have side effects and those listed for Tofacitinib include:
And these are just the most common ones. Some of them are more alarming still (you can see the full list here). The reason I am drawing attention to these side effects is not to frighten the life out of anyone. It is purely to offset the very understandable temptation that presents itself, whenever a breakthrough is reported in the press, to jump on the treatment bandwagon before it has even been road tested.
Reading about this research prompted me to think in more general terms about why a treatment designed for rheumatoid arthritis should be effective for alopecia areata and vitiligo too. Autoimmunity is the obvious common denominator, so it seems likely that the natural remedies that work for one autoimmune disease might also be helpful for others in much the same way as Tofacitinib appears to be, but without the risks.
There are clearly differences between one autoimmune condition and the next but what they do all seem to have in common is inflammation. So it makes sense to me that the best natural treatments to explore if you suffer from an autoimmune condition are those that reduce inflammation inside the body. Creams and other topical treatments can help to reduce inflammation from the outside but, since the autoimmune process is an internal one, it must above all be addressed internally, which is why I believe a nutritional approach is so powerful.
Fresh, organic vegetables and fruits famously possess anti-inflammatory properties, and, for me, supplementing my diet two or three times daily with a green food formulation containing many of the most helpful plant ingredients was a crucial part of healing my defective digestive system so that my body could then use the other nutrients I was feeding it and get to work healing the vitiligo.
The results I had from this approach were dramatic and relatively rapid (if you call 18 months rapid). But I now wonder if the process of repigmenting might have been even quicker if I had been more careful about my food choices. I had always thought of myself as a fairly healthy eater, compared to a lot of people. However, I now realise that those of us with a predisposition to digestive problems and inflammatory responses really cannot afford to rely on the standard western diet to support our health, even if we make a token effort to choose healthy foods whenever the opportunity arises. It now seems to me that we either have to radically change the way we eat or we have to compensate with specific supplements (or, preferably, both - since so much of our "fresh" food nowadays is drastically depleted in nutritional value). So, while the scientists continue to look for a magic bullet that will heal all autoimmune diseases without too many nasty side effects, I shall continue to favour the natural self-help approach that worked for me five years ago and has kept my vitiligo at bay ever since but I shall continue to look for ways of improving this approach further and will keep you posted on whatever I find.
Part 1: how transparent are you?
It's a pleasantly warm July morning here in the north of England (yes, we really do get them sometimes) but there is still some hazy cloud cover so I am doing what I often do when I am at home at this time of the year and it's not sunny enough to work on my tan. I'm deep in blog research mode.
Sometimes I have a very clear idea of what I want to write about and other times – like today – I just see where google takes me. I currently have no less than eighteen tabs open on my browser because I keep jumping from one fascinating subject to another and back again. And, as I do so, my topic for this week slowly starts to reveal itself, dare I say, like a new patch of #vitiligo emerging gradually from the surrounding skin until it is fully formed!
I have written before about how amazingly diverse human skin colours and types are and about some of the many factors that influence this #diversity.
But it is a massive subject and today I find myself ricocheting off it in several intriguing directions at once (hence the many tabs). So, as I have no wish to confuse you, or myself, by tackling all of them at once, I will explore each topic separately over the next few weeks.
I shall have no difficulty in making part 1 of this series very clear – literally – because it is all about #transparency. I never used to think in terms of skin being either transparent or opaque. My professional background is in image consultancy and colour analysis, so the uniqueness of each individual's colouring has always interested me. But I had been taught to think in terms of depth, clarity and undertone, i.e. whether a person's colouring was deep, light, bright, muted, warm or cool. How #opaque their skin was didn't really come into it (although I think some colour analysts nowadays do take this into account when advising their clients on clothing and makeup).
What set me off thinking about the transparency, or otherwise, of skin was seeing this amazing picture of a newly discovered species of “Glass Frog” from Central America.
Being able to see its internal organs through the skin is a very visual reminder of the fact that skin is the living packaging that keeps our insides in and the external world out. And, whilst no human on earth (as far as I know) has such remarkable see-through packaging as this little Costa Rican creature, it is certainly true to say that human skin can also vary considerably in translucency. The best way I can describe it is to say that some people's skin looks like a delicate water colour whereas others' is more like an oil painting.
This seems to be true of all races although, in general, the darker the skin the more opaque it is likely to be. Some very fair-skinned white people have such a delicate skin that their veins are visible through it, whilst others are just as fair but completely opaque and this can also be the case with black and Asian skin tones: some have a sheer luminosity behind them and others are more “solid”. Some people with translucent skin are bothered by how “thin” their skin looks but, personally, I find all combinations of skin colour and opacity equally beautiful.
What is a bit weirder though is when a person has both types of skin at once, which is what can happen if you have vitiligo. Over the years, as my vitiligo developed, I noticed that the white patches were the water colour (i.e. translucent) and the normal skin was the oil paint (since my normal skin tone is quite opaque). This was especially apparent when I tried to camouflage the depigmented areas. I noticed that the depth and tone of the camouflage were not the only characteristics to be considered in choosing a suitable product. It also had to have the right texture in order to add opacity to the translucent vitiligo patch.
Oprah Winfrey's description of Michael Jackson's appearance is an example of the way in which a lack of pigment increases the transparency of a person's skin. She says, "Anybody who knew Michael Jackson will tell you that when you are up close to him—he had absolutely no pigmentation in his skin—you are looking at his veins when you look at his hand. You are seeing through to the blue veins, and they’re very, very apparent... You’re looking at a person who is almost translucent.”
My gradual repigmentation over the past few years has been even more interesting in this respect than the original depigmentation process because of all the varied levels of opacity I have observed on the patches as they regained their colour. In particular, the blue veins on my feet and hands, inner wrists and underside of my arms had been very conspicuous when they lost their colour. It was a bit like looking at seaweed from a glass bottom boat!
But, when the pigment started to come back, it did so in two completely different ways. Some of it returned as opaque freckles on the still translucent background, almost like barnacles on the boat's window. But in other areas the whole vitiligo patch gradually turned from translucent to more opaque, as if the boat had stirred up the sandy seabed creating a murky wash of colour. On the whole, these latter areas have a more even tone than the freckled ones because I didn't have to wait for them to join up. However, the non-freckled patches of #repigmentation have been slower to regain their opacity and some of them (mainly on my hands and feet) have remained a little lighter than the rest of my skin, though still flesh-coloured as opposed to white.
The freckled variety of repigmentation is well documented and can be split into three categories: perifollicular, where tiny dots of pigment form at the site of the hair follicles; marginal, where it forms at the outer borders of the vitiligo patches; and diffuse, where it occurs in freckles across the entire lesion. Whilst most of mine has been diffuse, I cannot find a description for the gradual reappearance of uniform skin colour that I experienced on some areas of my body, so I have no idea whether this kind of repigmentation even has a name.
If anyone else has similar experiences of various styles of repigmentation I'd love to hear from you. Meanwhile, I'll be back next week with part 2 of my Weird and Wonderful World of Skin Colour!
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.
"Can I still live with vitiligo and be successful? Hell, yes,"
Continuing with my previous topic about the increasing number of helpful vitiligo blogs and stories out there, I’d like to mention one that I spotted this week on YouTube and that I found genuinely inspiring, despite the fact that it is part of an advertising campaign. The vitiligo “confession” features a wonderful young woman called Cheri Lindsay, a college volleyball coach whose beauty, confidence and common sense shine through this short video in which she demonstrates that she is not afraid to reveal her vitiligo to the world but has chosen to help others to see past it in daily life by using #camouflage (in this case, Dermablend Professional – which evidently does a fantastic job of matching her deep skin tone).
For many vitiligo sufferers, “to hide or not to hide?” is a big question – psychologically and even morally. Psychologically, it is not easy to deal with an unwelcome, unexpected and unpredictable transition from “normal” to “disfigured”, especially when all the doctors tell you there is no cure. So, covering up is an obvious coping strategy. If you can hide your white patches you don’t have to put up with people staring at you or asking you if you have a contagious disease. You can also pass a mirror or a shop window without constant visual reminders of your condition. In short, camouflage enables you to avoid the unwelcome attention of others and also, to some extent, it enables you to forget about your vitiligo for a while yourself and get back to living your life. However, there is the opposing view (and this is where the moral issue sometimes comes in) which says that camouflage can be a cop-out.
Personally, I always did everything I possibly could to keep my vitiligo a deep, dark (or should that be light, white?) secret. But that was before the days of reality TV, internet video and social media, long before the world became accustomed to all and sundry baring their soul and sharing the intimate details of their lives with the rest of the planet. Now that this is an acceptable norm, I feel a little guilty for not “coming out” until after my vitiligo had started to disappear. After all, if more of us had stood up to be counted sooner, vitiligo would have grabbed headlines earlier. Maybe, if vitiligo had received greater publicity decades ago, people would not have been so quick to believe that #MichaelJackson was deliberately bleaching his skin expressly to deny his ethnicity, maybe more research money would have gone into finding a cure, and maybe fewer people would be having to deal with the psychological, practical and social consequences of living with this poorly understood skin condition.
Coming full circle, Cheri Lindsay, whose father also has vitiligo, (see her Beauty Icon interview here) is someone who seems to have made sense of this dilemma and concluded that you can be open about your vitiligo as well as conceal it, and both for very good reasons. In making her vitiligo public and championing the cause so effectively, she is providing inspiration to many vitiligo sufferers around the world, educating those who don’t know what it is and, hopefully, helping to attract the attention of research and funding bodies. But it seems to me that she is also pragmatic: she understands that human nature is what it is. She knows that you can’t expect people not to focus their attention on something as eye-catching as big white patterns on a beautiful, brown face. She realises that this is inevitably a barrier to everyday activity and communication. So she chooses to use camouflage in order to remove that barrier. I think she is a very wise and strong woman and has made a decision that is right for her and that answers the question “to hide or not to hide” in a very positive way.
Let's keep sharing our good news
When I first put my #vitiligo success story on the internet four years ago there were very few websites or blogs around that offered a genuine, personal account of what it is like to have vitiligo and even fewer that actually offered any hope of recovery. Now, I’m happy to say, more vitiligo sufferers are sharing their experiences and their treatment strategies online and this is a very positive development for a number of reasons.
The most obvious benefit of this increase in #vitiligoblogs is that it contributes to the sense of community I referred to in myprevious post. A sense of community is especially important because vitiligo is still relatively poorly understood by virtually everyone who is not directly affected by it (the general public, the media and even most of the medical profession) so it helps enormously to know that there are others around the world who understand how we feel and who share our hopes, fears and challenges on a daily basis.
But it seems to me that there is another very important benefit in real vitiligo sufferers posting their experiences online: the more genuine sites, blogs and social media posts there are, the less visibility the charlatans are likely to have. The reason I say this is that when I started my story site I felt like a lone voice in the wilderness because – apart from the authority and scientific sites - most of the other results that came up in vitiligo searches were bogus, poorly-disguised attempts at advertising expensive and useless “guaranteed cures”. (These unscrupulous people know who they are so I won’t name names.) But now you are far more likely to find good, credible sources of information and support so that, by contrast, rogue sites should be pretty easy to spot. If in doubt, beware of any site that promises 100% results or claims to have found either THE cause of vitiligo or THE cure.
So, in this post I would like to mention some of the personal #successstories I have come across recently that have impressed me. Aine Anderson’s story, as reported by The Vitiligo Girl is a good example. Not only is this interview about Aine’s repigmentation inspiring and informative but the photos are great too. Her experiences resonate very strongly with mine – in fact, when I read what she says about her digestive problems and sensitivities and her belief that her vitiligo is an internal issue, I could have believed I was reading about myself! Other interviews on the same website tell a similar tale. One is with Xichao Mo, the author of My Victory Against Vitiligo who also points to digestive issues being the root cause of his vitiligo and who also reversed his pigment loss using a #nutritionalapproach.
Reading about such similar experiences as these reminds me yet again that some of the most knowledgeable people on the subject of vitiligo are not the highly qualified dermatologists but the sufferers themselves, whose prolonged struggle with the condition and patient research and experimentation with self-healing has started to build up a really compelling body of anecdotal evidence. I find it ironic that every medical doctor I have ever consulted about my vitiligo has dismissed the idea that there is any link whatsoever between nutrition and vitiligo and yet the only. long-term success stories I have come across (including my own) all attribute their recovery either wholly or predominantly to nutrition.
I am looking forward to browsing more vitiligo stories during the coming week and will continue with this theme in my next post. Have a great weekend!
A vitiligo blogger since 2011. My name is Caroline. I had vitiligo for nearly 50 years before finding an effective treatment. I created this blog to share my experiences with others affected by this skin condition.