... 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.
Great vitiligo coverage - in every sense of the word
I was delighted to see fledgling entrepreneur Polly Gotschi on the hugely popular prime-time BBC TV show #Dragons'Den earlier this week. Her simple and heartfelt business pitch for investment in her Vitiliglow camouflage make-up highlighted the practical and psychological issues facing #vitiligo sufferers in a very public way. In the face of this high-pressure situation Gotschi did not - to her immense credit - feign commercial expertise that she clearly didn't have. She was engagingly open and understated in her presentation and her passion for her business mission was obvious to all.
She won the warmth and approval of every one of the dragons - and how many others can claim to have achieved that? Not only did she get two dragons to make her an offer and eventually secured backing from one of them to the tune of £40K, but she also championed the cause of the estimated 1% of the population who suffer with vitiligo. For many viewers I am sure it will have been the first time they had ever heard of this pigmentation disorder. So to see such positive and high-profile exposure for it is very encouraging indeed.
My feeling, as I watched the usually hard-nosed dragons' positive reactions to Polly's presentation, was that every one of them bought in to it, even though only two actually made her an offer. But what they bought into, it seemed to me, was not necessarily the make-up but the person behind it. And the mini bidding war that ensued between Touker Suleyman and Sarah Willingham appeared to be driven as much by a keen desire to work with Gotschi because of her sincerity, passion and personal charm as because of her product.
The other thing I felt watching the programme was a strong, personal sense of kinship with Polly Gotschi. She talked about how she spends a lot of her time blogging, corresponding with other vitiligo sufferers and offering advice; and the dragons were quick to spot the fact that she has a strong social conscience. She is obviously a lovely person to start with but, added to that, she conveys a compassion and desire to help improve the quality of life for people with vitiligo that I identify with completely. It was exactly this that motivated me to share my own vitiligo story five years ago and to write my blog each week and it is the reason I offer support to others and research treatments and products for vitiligo on an ongoing basis.
In fact, this same desire to help and share is something that characterises a lot of vitiligo sufferers. I chat and email on a daily basis with vitiligo friends all over the world and have noticed that, whilst some are angry and bitter about their condition, most have developed tremendous empathy with each other as a result of their own experiences. I'm sure this heightened sense of fellow-feeling is not unique to vitiligo (for example, it is famously evident among cancer sufferers and cancer survivors too). But there seems to be a law-of-compensation kind of thing that occurs when people learn to live with what is, for many, a severely disfiguring and confidence-robbing condition. It brings them face-to-face with all sorts of fundamental questions like “how do we perceive others?”, “why do we judge people based on how they look?”, “what matters about a person – their spirit or their skin colour?” And facing these sorts of questions on a daily basis tends to make you a lot more tolerant and compassionate than you would ever have been without your vitiligo. This is why the forums and support groups are full of people like Polly who want to help and are happy to take time to encourage others and share their own experiences. Ironically, many (though by no means all) people with vitiligo feel ugly or at least fear that others will see them this way. But I have found more beauty of spirit (and often breathtaking physical beauty too) among my vitiligo friends than you could hope to find via all the modelling agencies on the planet!
In some ways, living with a skin condition that attracts attention and the risk of judgement, rejection or ridicule can be a lot like walking into a dragons' den every day of your life. But the more public exposure vitiligo receives, the easier it becomes to confront those dragons. So, well done the BBC for selecting Polly for the programme and well done, Polly, for slaying your dragon with such courage and charm.
Can green pigment restore brown pigment?
Writing this blog series has made me realise what a multicoloured world we live in. If you find this subject as fascinating as I do, then this website, Causes of Color, is well worth a read. And if you think human beings come in a weird and wonderful variety of tones, animals (and plants) leave us standing.
The predominant pigment in humans – and other mammals - is #melanin (the brown #pigment affected by #vitiligo). This is why variations in the colour of human #skin revolve mainly around the quantity, or lack, of brown pigment present.
This gives rise to an impressive range of different shades of skin but is as nothing compared to the mind-boggling palette of the animal kingdom, which ranges from transparent to drab, from subtle to vividly bright and even luminous.
Equally, most human beings have one fairly uniform colour to their whole skin (unless they have a particular skin disorder, like vitiligo or mosaicism) whilst most animals have multicoloured skin, scales, fur or feathers, often in fascinating patterns. And whereas human skin simply turns either pink or a deeper shade of brown (depending on the amount of melanin present) when exposed to sunlight, many animals change colour dramatically. This can be for a variety of reasons, like age, camouflage, mating, climate, or diet. For example, the reason flamingos are pink is because they eat shrimp that have, in turn, fed off microscopic algae that manufacture red and yellow carotenoids. Without these "second-hand" pigments in their diet, all flamingos (and shrimps) would be grey.
Like humans, their colouring can also be affected by pigmentary disorders,
resulting in either leucism, albinism or melanism and their markings can differ from the norm, like the amazing little kitty below.
What I didn't know until it popped up on my browser was that plants can also suffer from such disorders. Just like human leukoderma (loss of skin pigment) the absence of pigment in plants causes them to turn white like this strawberry and wherever membranes are thin - on petals and leaves, for example - albinism causes the plant to appear translucent like the one below.
Where plants are concerned, the pigment affected is not melanin, of course, but chlorophyll. Chlorophyll, as you will probably remember from your school-day biology lessons, is the green pigment responsible for the absorption of light to provide energy for photosynthesis. Not only is this pigment crucial for the plant's survival (which is why albinism is lethal to plants) but it is also known to have so many human health benefits that, whilst they are tried and tested anecdotally, some are not yet fully understood scientifically.
The thing I find particularly interesting about this, from a personal perspective anyway, is that one of the nutritional supplements I used to repigment my vitiligo (and still use every day to keep it at bay) is a green food which, of course, is packed with chlorophyll. I'm glad to say that eating extra-large quantities of greens doesn't turn a person green in the way that the shrimp turn flamingos pink! But, what does seem to happen is that the antioxidants and other nutrients in these chlorophyll-rich "superfoods" produces a healthy environment in the human body for normal melanin production to resume. I suppose what strikes me as satisfyingly apt is that it should be the pigment found in one kind of organism that is instrumental in restoring pigment to an entirely different species: it's almost like getting a transfusion from the plant world! How weird and wonderful is that?
So, to all those "pigment donor" veggies out there that selflessly lay down their lives to keep my skin and yours healthy, I say a sincere thank you.
My name is Caroline.