"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!
Vitiligo sufferers support each other as never before
Advances in medical research may not have made a significant impact so far on the quality of life for people with #vitiligo, but advances in communications certainly have. In the past 5 years or so public awareness of vitiligo (or #leukoderma, as it is sometimes known) has become much greater, largely thanks to instant news, social media, online support groups and #vitiligoblogs.
Until the death of #MichaelJackson in 2009, very few people had even heard of vitiligo unless they, or someone close to them, actually had the condition themselves. Of course, it is still not even close to being as well recognised and understood by the public (not to mention the medical profession) as more common skin conditions like eczema and psoriasis. But MJ’s vitiligo was something that gradually filtered into the public consciousness in the aftermath of his untimely death and bestowed vitiligo sufferers everywhere a bizarre kind of credibility - a celebrity endorsement of the condition, as it were. Since then many vitiligo sufferers have felt more secure about “coming out” on social media and showing off their white patches, some even turning them intoart. In fact, a real sense of community has developed online involving mutual support, sharing of experiences and a general accessibility of information about vitiligo to an extent that I would never have thought possible when I was a young woman hiding my white patches from the world and feeling very alone.
It just so happened that this enlightened era of community and communication dawned at about the same time as I was actually recovering from vitiligo (my repigmentation started in the Spring of 2010). So, in a way, you could say that it came along at a time when I no longer needed the encouragement and emotional support myself. However, it did bring with it the ability for me to share my good fortune by putting my story online and to do a huge amount of online research into the causes, effects and treatments of vitiligo, both for my own interest and to pass the information on via my blog and via direct communication with my many vitiligo friends. So I am very grateful for the technology that has made this possible.
During this time, I have also enjoyed reading some of the other vitiligo blogs that have gradually started to appear and am struck by the similarities, as well as some of the differences, between the views and experiences of these other bloggers and my own. This opens up quite a big topic, which I would like to expand on, so please keep watching this space and I will pick up on it in my next post.
In the meantime, happy Valentine's Day to all!
What is the best diet for vitiligo?
I am often asked whether I ate any special #diet in the course of my repigmentation and whether I would recommend #vitiligo sufferers avoid any particular #foods. So, I thought this might be a helpful topic to cover this week in my blog. The quick answer is, no and yes! No - I didn't follow any particular diet, and yes – I probably would recommend avoiding certain foods. This sounds contradictory, so I will explain.
The main reason I did not change my eating habits was that, at that time, I really had not made the connection between my vitiligo and nutritional deficiency, so a dietary approach to healing my skin had never occurred to me. It was only once I started, rather half-heartedly, to experiment with some supplements and began to see my pigment returning, that I realised there must be a link. And, since my recovery was then so dramatic and so fast, I didn’t feel the need to change my diet because the supplements were proving to be effective without any other type of intervention.
However, roughly five years on and many, many internet pages of research later, I now believe that I might have experienced an even faster recovery if I had paid more attention to my diet and this has led me to be a bit more selective about what I put on my plate than I used to be. I still use the same supplements and none of my white patches have returned, so I don’t feel the need to worry too much about achieving the perfect diet. But I have come to realise that certain foods don’t agree with me and I therefore keep their consumption to a minimum.
Before I go any further, I want to stress that my list of foods-best-avoided will not necessarily be relevant to everyone with vitiligo. The reason I say this is that vitiligo, or #leukoderma, is a notoriously complex condition for which there is no single, common cause or #cure. Having said that, there are definitely enough similarities in the experiences of other vitiligo sufferers to suggest that a significant proportion of people with the condition might benefit from the following information. So, here goes…
Do white foods cause vitiligo?
Quite a prevalent theory at one time, albeit a widely discredited one, was that white foods should be avoided. I have always viewed this advice with the utmost scepticism because it seems to be based on a naively literal interpretation of the adage “you are what you eat”. However, since my own vitiligo appears to have been caused by digestive issues, specifically an inability to absorb all the nutrients in my food, a logical explanation for the white food theory comes to mind. There can be all sorts of reasons for poor digestion, a fairly common one being an allergy or sensitivity to a particular food. Dairy products (which are typically white) are commonly implicated when it comes to food intolerance. So maybe the idea is not as crazy as it sounds. Added to this is the fact that eating too many processed foods like refined sugar, white flour and rice and trans fats has an adverse effect on digestion and elimination and contributes very little nutritional value to the diet. So, perhaps there is some merit in avoiding a great many white foods, whether you have vitiligo or not.
Should I cut out coffee and alcohol?
Personally, I have never cut coffee, wine and the occasional gin and tonic out of my routine. Maybe I should have done since they do place a burden on the liver and there is a significant amount of evidence to suggest a link between vitiligo and #liver disease. I suppose I have always justified my position on this on the basis that a little of what you fancy does you good! If I were to be completely honest with myself, I think I might have recovered even faster if I had cut these treats out (I suppose I will never know) but I am convinced that the reason I was able to get away with it was because the Five a Day+ supplement I took – and still take – every day is such a powerful detoxifier that it more than compensates for the negative effects of these stimulants.
Should I cut out meat?
Some people with vitiligo recommend sticking to a vegetarian diet but I have not heard of any dramatic success stories based on this advice and I have never gone vegetarian myself. I do think that the best diet for vitiligo (and for everyone, some to that) is one that consists mainly of fresh vegetables but I also think that smaller ratios of the other food groups can be important in maintaining good health and my “meat” of choice is actually fish. I eat very little red meat and I avoid pork, not for any religious reason, but because I find it very hard to digest and I don’t want to put additional strain on an already compromised digestive system.
Should I cut out gluten and dairy?
I don’t think there is necessarily a direct link between #gluten or #dairy and vitiligo. However, I do believe there is a definite link between digestive abnormalities and vitiligo. There are many reasons for digestive problems but an inability to break down certain proteins is certainly one of them and gluten and lactose are two of the most common culprits. My advice to anyone with a chronic condition like vitiligo would be to avoid eating any foods that you notice cause you digestive symptoms even if you test negative for those allergies. I had myself tested for gluten #allergy and the result was negative. However, I do notice my digestion improves when I minimise my gluten intake, so I avoid it as much as I can.
So, what am I saying?
To summarise, I don’t think there is any particular vitiligo diet that will magically restore lost pigment. However, I believe that the foods that are typically good for the average person (i.e. nutritious, fresh, preferably organic vegetables, fruit, fish, meat, olive oil, dairy and whole grains) will be beneficial for vitiligo sufferers just as the foods that are typically bad for the average person (i.e. highly processed, refined or sugary, salty and fatty foods) will probably be even more harmful for anyone with a chronic condition like vitiligo. More specifically though, if vitiligo really is – as I think it is – a symptom of underlying health problems, then vitiligo sufferers should pay particular attention to any foods that cause digestive symptoms like bloating, stomach cramps, acid reflux, indigestion, abnormal bowel movements, etc. or more general symptoms like fatigue or headaches. These are all typical symptoms of food #intolerance and should give you a clue as to what to avoid in your diet.
Eating healthily and avoiding allergens and irritants will almost certainly improve your health so I would definitely recommend you do this in order to give you the best chance of recovery. However, it is unlikely to be enough on its own to cure your vitiligo. In my case, what really made the difference was a daily intake of highly nutritious green foods (in concentrated form to ensure high enough doses) and other vitamins and minerals (specifically a product called Boost containing those nutrients affecting the pigmentation process) taken over a period of months. Whether or not this would be the answer for everyone with vitiligo probably depends on whether the root cause of their pigment loss was the same as mine but I would certainly say it is well worth considering.
My name is Caroline.