It's enough to make you go grey!
A few days ago a reader posted a really interesting comment on a hair dye article I published a while back. She shared how her #vitiligo started around the same time as she had begun regularly using permanent #hair- dyes containing the usual harsh ingredients (PPD, ammonia, Hydrogen peroxide, etc.) Her experience supports the known evidence that these substances can cause skin de-pigmentation.
Even more worrying than her vitiligo (as if that wasn't bad enough) was the fact that she was also diagnosed with bladder cancer, which is the particular cancer that has most often been linked to the regular use of permanent hair dyes.
The most damning study on the dangers of these ingredients, conducted in California and published in 2001, found that women who used permanent hair dye at least once a month were twice as likely to develop bladder cancer, as women who did not use permanent hair dye. The research also concluded that those who reported regular use of the hair dye for at least 15 years were more than three times as likely to develop bladder cancer as non-dye users, with hairdressers sharing high levels of risk due to occupational exposure.
Since publication of these results, scientific opinion has differed considerably as to their validity. For example. in the Journal of the American Medical Association (JAMA) May 2005, some research was published that looked into all the studies on hair dyes causing cancer. This found that there was unlikely to be any link between dyeing your hair and bladder cancer.
Cancer Research UK points out that a lot of hair dyes made before 1980 contained chemicals that were known to cause cancer in mice but that, since 1980, hair dyes have changed dramatically and many no longer contain these cancer causing chemicals (I'm not sure I am comfortable with the word “many” there! - especially as the article goes on to say that recent studies in China and the USA have pointed to an increased risk for women with certain gene types of developing lymphoma if they use hair dyes).
The website of the Cancer Council of Western Australia provides a potted history of the argument, referring to studies carried out in 2002, 2008 and 2011, and concludes with the following opinion:
“These studies should give reassurance that the link between using modern hair dyes and cancer is, at most, very minimal. Further research is needed to investigate whether certain subgroups may be at increased risk, such as those with a genetic predisposition. People who colour their hair are unlikely to have an increased risk of cancer, even if they have been colouring their hair regularly for many years. If you are still concerned, ensure that you colour your hair in a well ventilated room or salon, so as to minimise exposure to the fumes from hair dyes. Otherwise, embrace your natural colour.“
Whilst I find some of these counter-arguments a tiny-weeny bit more reassuring than I had expected (given the drastic reactions these controversial ingredients can cause), I remain very firmly in the Why On Earth Risk It? camp.
The advice offered in the paragraph quoted above to use permanent hair dyes "in a well ventilated room" strikes me as faintly ridiculous, since most hair salons I have ever visited are far from well ventilated and, more to the point, what we are talking about is actually painting these chemicals onto our skin and leaving them there for a considerable time, not just breathing them in.
But it is the point raised about increased risk for those with a genetic predisposition that is really the clincher for me. If the consensus of opinion is – to paraphrase the Cancer Council of Western Australia - that permanent hair dyes are probably a bit toxic and a bit carcinogenic but probably only really potentially lethal for people who have very regular, long-term exposure and/or have a genetic predisposition, then I am certainly not going to be rushing off back to the colourist any time soon!
I am all for reducing my risk of cancer as much as I possibly can, especially as - like most people - I have no idea if I am genetically predisposed to developing it or not. And, as someone who does know she has the vitiligo gene, I feel the same way about avoiding known de-pigmentation triggers, which is why I no longer use permanent dyes, opting instead for pure (no added nasties) henna or the only brand of (semi-permanent) colour I have come across that is free from all of the following: ammonia, peroxide, PPD, DTA, phenoxyethanol, resorcinol, propylene glycol, heavy metals, parabens, mineral oils, GMOs, gluten and artificial fragrances.
Anyway, to come back to the blog comment that started this post, it really got me thinking again about this whole subject of grey hair and how to combat it safely and I have a feeling I will be returning to the topic again soon...
Could new cancer research hold the key to a cure?
One of this week's most exciting media stories was the spectacular success scientists are experiencing with engineering immune T-cells to target a particular type of blood #cancer. To administer #T-cell-therapy, doctors remove #immune cells from the patient, tag them with “receptor” molecules that target a specific cancer and then infuse the cells back into the body. In effect, they are successfully programming a patient's own immune system to attack cancers in the same way as other T-cells target flu or other infections.
This breakthrough research is obviously very encouraging for everyone, given that cancer is still a leading cause of death worldwide, with one in two people born after 1960 (in the UK) being diagnosed with some form of cancer during their lifetime.
But for those of us with vitiligo or other autoimmune conditions, the research may have additional benefits, since the greater the advances in T-cell therapy the more likely it becomes that it could be used to reprogramme our immune system to prevent it from attacking healthy cells – i.e. melanocytes, in the case of autoimmune vitiligo.
An interesting paper - Targeting Antigen-Specific T Cells for Gene Therapy of Autoimmune Disease - describes previous research aimed at achieving exactly this aim. Not only have scientists been working on reprogramming T-cells to correct autoimmunity but they are also trying to use them to deliver therapeutic and regenerative products to sites of inflammation and tissue destruction. So it seems that there is in fact more than one way in which this particular kind of gene therapy could use the body's own immune system to counteract, or even cure, diseases like multiple sclerosis, diabetes mellitus, rheumatoid arthritis and vitiligo.
When I read about this latest cancer research, one particular comment made by Lead researcher Professor Chiara Bonini jumped out at me. He said:
“T-cells are a living drug, and in particular they have the potential to persist in our body for our whole lives.”
If this potential becomes reality, not only could it make the scourge of cancer a thing of the past but it could also provide a permanent solution to autoimmunity, making the onerous, unpleasant and often ineffective treatments and lifestyle changes currently used to combat such conditions unnecessary.
From a personal perspective, I am very grateful that I have been able to reverse my pigment loss and keep my vitiligo at bay on an ongoing basis. I know that many vitiligo sufferers are not as fortunate. But my continued success does depend on ongoing nutritional supplementation and careful avoidance of known vitiligo triggers. How wonderful it would be to live life as if vitiligo (and so many other diseases) simply did not exist … because they had finally been beaten. We are not there yet, but the news this week does appear to have brought us a significant step closer!
Last week I flagged up five coping strategies that are often adopted by vitiligo sufferers, unaware that they may actually cause further depigmentation. This week I will highlight a further five potentially counterproductive #vitiligo-solutions and, once again, suggest some alternatives that could achieve the desired outcome without running the risk of making matters worse.
1) Staying out of the sun
Conventional wisdom has it that anyone with vitiligo should stay in the shade on sunny days or, at least cover up with clothing and slap on plenty of sunscreen. The logic behind this, as most doctors will point out if asked, is to avoid burning the white patches of skin which have no tanning mechanism to protect them and to avoid the risk of skin cancer that this poses. Whilst it is certainly wise to avoid sunburn, there could be some pitfalls in taking this advice at face value. For a start, avoiding the sun carries a risk of vitamin D deficiency, a condition that many vitiligo patients suffer from to start with, so staying in the shade is only likely to increase this problem. Secondly, most commercially available sunscreens contain chemical irritants that may well trigger further depigmentation. And, thirdly, regular UV exposure (phototherapy) is known to be one of the most effective treatments for vitiligo, so avoiding it completely makes very little sense, especially given that research has shown that people with vitiligo are in fact less likely to develop skin cancer than those who do not have the condition.
I know from my own personal experience that it is possible to use sun exposure to help repigment vitiligo patches, as long as you do the following:
1) build up gradually from 5 or 10 minutes at a time, increasing slowly, depending on the strength of the sun and your skin type;
2) be consistent with these moderate sun sessions, ideally 3 times weekly; 3) take supplements that will provide natural sun protection from the inside (I found that taking daily doses of chlorophyll-rich green foods and supplements containing the precursors of melanin enabled me to stay out in the sun longer than I had previously tolerated);
4) only use chemical-free sunscreens and – in my opinion - only when absolutely necessary; and 5) use safe, measured doses of narrowband UVB if sun exposure is not an option.
2) Avoiding swimming in the sea
Like many people in this situation, I always avoided swimming when I had widespread vitiligo because being seen in a swimsuit was my worst nightmare. Unless you can bring yourself to shrug off the curious stares of others on the beach, there is probably no easy solution to this problem. But, the fact is that in avoiding salt water swimming for so many years, I may have been missing out on a potential therapy. Studies have shown that salt water can help treat and reduce flare ups of eczema, psoriasis and acne so it is well accepted as a skin therapy and is, in face, an important part of the Dead Sea therapy for vitiligo.
If you can't bring yourself to bare all at the seaside, you can achieve the same skin benefits (albeit without the addition of exercise, sunshine and sand castles) by adding Dead Sea salt to your bath water several times a week and using the mineral-rich black mud skin products from the same company.
Even products designed for use with skin conditions and recommended by dermatologists can contain many of the potentially irritant chemical ingredients found in regular cosmetics and most contain parabens and fragrances.
If you rely on camouflage products to help you cope with your vitiligo, I am not recommending you stop using them, but I would suggest you look closely at the ingredients, choose brands that have the fewest known irritants and only use them when you really need them.
My quest for a truly effective camouflage product that is guaranteed not to increase the risk of irritation and further depigmentation is still ongoing but, in the meantime, Viticolor Gel works well as a semi-permanent camouflage, since it stains the skin. To ensure you do not raise your skin's free radical levels when using it, I recommend waiting 15 minutes or so after application before sun exposure. This will minimise the loss of antioxidants that occurs when self-tans are exposed to UV light. Applying Vitix to the camouflaged areas once they are dry will boost antioxidant levels further and can stimulate new pigmentation at the same time, so the two products work well in tandem.
4) Eating a “healthy” diet
I must confess that during my repigmentation I relied heavily on supplementing my diet with the super-green formula that formed part of my recovery protocol. So, beyond daily doses of that, I didn't pay very much attention to what I put on my plate. But I have read enough since then to convince me that making the right food choices can give you a huge advantage if you are trying to regain your lost pigment. The problem, of course, is knowing what those right food choices are, given that sometimes the very foods we think of as being “healthy” can be the opposite for someone with an autoimmune condition. Eating plenty of fruit and vegetables and whole grains is, quite rightly, considered to be good for the general health of most people. But that doesn't mean that all fruits and all vegetables are a good choice for someone with vitiligo, since some (like tomatoes, peppers and other nightshades) can cause inflammation and increase the autoimmune response. And, for anyone whose pigment loss is linked to digestive issues, grains – and especially gluten - can be very problematic and the sugar content of fruit can compound a pre-existing candida problem.
I don't think there is a one-size-fits-all diet for vitiligo recovery because we are all different. But I have come to the conclusion (after a lot of reading and experimenting on myself!) that the following tips are likely to help in the vast majority of cases:
5) Worrying about your vitiligo
Of course, worrying doesn't really count as a vitiligo strategy. It's more like a natural consequence. Personally, I spent years alternating between two states of mind in relation to my vitiligo. Sometimes – usually when the patches were spreading – I obsessed over every change I saw in my skin. The rest of the time I lived in a state of total denial by covering up my patches and pretending they didn't exist. The trouble with that was that each time I caught sight of my two-tone skin I would grieve for my lost colour so it was almost like losing it all over again. Neither response was remotely constructive. Looking back now, I can see that both reactions were quite damaging mentally and physically, especially as stress is widely regarded as a trigger for vitiligo. What probably made matters worse was that I chose not to share my feelings with anyone else.
Thanks to the internet, social media and improved public and scientific awareness, it is much easier today to come to terms with having a condition like vitiligo. II would go so far as to say that modern communications have offered us freedom from our sense of isolation and hopelessness. So, if you find yourself trying to cope on your own or bottling up your fears and emotions like I did, I would highly recommend tapping in to the global online community of fellow “vitiligans”. “With a little help from their friends,” (to misquote a great song), many people not only “get by” but find they develop a much more positive outlook, or even embrace their vitiligo as something that has added to their quality of life in some way. Others of us have found effective ways of treating ourselves in the absence of constructive help from our doctors. Crucially, most of us have a much greater understanding of the condition now than at any time in history and a far stronger conviction that a universal cure is getting closer every day. In opening yourself up to these channels, not only will you find compassion, shared experience, friendships and a wealth of knowledge, but you will be able to offer these things to others too. And that can be every bit as therapeutic as being on the receiving end.
... that could be making your white patches worse
This week I want to highlight a cruel #vitiligo irony... and offer some tried and tested solutions.
Most people who have vitiligo use various strategies to help them cope on a daily basis with their white patches. Whether these strategies are aimed at treating the condition itself or just concealing it, there is a cruel irony in the fact that the very solutions many of us use to try to make things better may, in reality, be making them worse.
One of the clearest definitions of the word “irony” that I ever read (apart from the illustration above!) sums up what I am talking about: "a state of affairs or an event that seems deliberately contrary to what one expects and is often wryly amusing as a result".
Not that there is anything particularly amusing about vitiligo. But, ever since I started to reading extensively on the subject, I have had to smile – well, wince really – each time I come across another of these ironies. I gradually became aware, one discovery at a time, that many of my efforts, over five decades, to cope with my vitiligo had probably been preventing it from healing and actually causing it to spread like wildfire (taking out every fire hydrant in its path).
So, here is some information that I hope will help you avoid the pitfalls that caught me out in my quest for vitiligo solutions. The good news is that for every strategy that could be harming you there is an alternative one that should genuinely help instead. So, for the ten vitiligo strategies that could be making your pigment loss worse (and, more importantly, for the solutions you can use instead), read on. I will tackle the first five in this post and continue with the remainder next week to save this post going on for ever!
Clothes were my first line of defence in covering up my vitiligo. I'm not suggesting you stop wearing them! But the wrong types of clothes - typically tight synthetic fabrics containing petrochemical ingredients and/or dark dyes (dark, stretch jeans come to mind) - are the worst choices. Not only are the chemicals used in manufacturing, dying and treating these sorts of garments a threat to your skin, but the friction caused when wearing tight clothing can also lead to inflammation and pigment loss (see this post on the Koebner phenomenon for more details).
I now avoid synthetic fabrics, dark dyes and very tight clothing wherever possible and, if I can't resist the odd garment that poses a threat, I make sure I wear a DermaSilk garment underneath. This creates a physical barrier and also soothes any irritation.
This used to be my number two strategy for covering up all the white patches that were not hidden by clothing. The winter months weren't too bad because my natural skin colour is relatively light anyway. But in the summer, I used self-tans on an ongoing basis so that I didn't have to wear long sleeves and trousers all the time. Looking back, it was during the years when I used self-tans the most often that my vitiligo spread the fastest. I didn't put two and two together at the time but I now know that DHA, the active ingredient in self-tanning products, causes higher levels of free radicals in the skin when exposed to sunlight. And, of course, since free radical damage is thought to be one of the mechanisms involved in the development of vitiligo, adding to the problem is the worst thing you can do.
I no longer use self-tans containing DHA. I am fortunate in having repigmented almost totally but, if I do occasionally want to mask the few remaining pale patches on my hands and feet I find that a natural mineral powder foundation, set with a damp cloth is usually enough to do the job.
I started wearing quite heavy foundation at school to conceal my "panda eyes" and the loss of pigmentation at the corners of my mouth and I relied more and more on covering up my vitiligo with makeup as time went by. Again, the irony of this is that for years I was subjecting my already compromised skin to some of the very chemicals known to cause irritation and contact leukoderma. Like most females, I also used to use high street personal care items like deodorants, shampoos, soaps and perfumes, unaware that all of these were almost certainly contributing to the problem.
I now quite often wear little or no makeup. But, when I do want to glam it up, I reach for 100% natural, organic products. I use a good quality, organic coconut oil as a moisturiser, deodorant, conditioner, lip balm and makeup remover. And I only ever spray perfume onto the outside of my clothing, never directly on my skin.
4. Hair & lash dyes
After years of beautiful big, wild 1980s perms, I started, prematurely, to develop greys along my hairline and at my temples (a symptom of my vitiligo that was no doubt aggravated by the harsh perming solutions). Then, to compound the error, I started to use permanent dyes in order to hide the greys! I also resorted to lash dyes to save the bother of applying mascara every day. Given that I already had some vitiligo on my scalp and a sprinkling of white eyelashes, the last thing I should have done was to repeatedly apply chemical dyes to these areas. Such dyes contain a host of harsh, industrial grade ingredients including ammonia, PPD, parabens, propylene glycol, DTA, phenoxyethanol, peroxide, resorcinol, heavy metals and artificial fragrances and are among the consumer products most frequently cited as likely to cause chemical depigmentation.
Now I only ever use henna to colour my hair and my current favourite is this semi-permanent range which I find actually gives me better colour, condition and grey coverage than the chemical-based permanent colours I used to use. And instead of dying my lashes I only use mascara (preferably a 100% natural one) and make sure I remove it thoroughly every night with coconut oil.
5. Protecting your skin from chemicals
I have always worn rubber gloves to wash the dishes and do any housework involving chemical agents in the mistaken belief that this would keep my skin from coming into contact with substances that might make my vitiligo worse. Sure enough, the gloves protected me from the cleaning agents but what I didn't realise was that the gloves themselves contained chemicals known to cause depigmentation (will the irony never end?!!).
I still wear rubber gloves for household chores but now I wear special protective dermatological gloves inside them.
I really hope that this information will help you to protect yourself from the potential triggers that surround us in our modern every day environment and that the solutions I suggest (or maybe other solutions that you find yourself) will enable you to substitute safe alternatives. This is not the end of the topic though. Don't miss next week's continuation of this subject when I will have five more vitiligo solutions that may be doing more harm than good... and five more safer alternatives. Thanks for reading, and see you then!
My name is Caroline.