... are the ones in my waste bin!
I have had problem skin (in the form of vitiligo) virtually all my life. As a result, I have had ample opportunity to observe how my skin reacts to certain substances, events and environments. My five decades worth of first-hand knowledge has conformed, by and large, with the scientific and anecdotal information I have read over the past several years. But I came across some historical research (dating from 1984) the other day that was completely at odds with my own experience and I would be really interested to know how many vitiligo friends out there share my surprise at the findings.
The research in question concluded that a vitiligo sufferer's white patches are less sensitive to allergens than their normal skin. This strikes me as counterintuitive, given that depigmented skin is known to be more sensitive to UV light than normal skin and is also known to have an increased sensitivity to oxidative stress. So why, I wonder, would it be less sensitive to irritants and allergens? Mine certainly isn't. My white patches always reacted more dramatically to insect bites and stings than the rest of my skin and would often itch and turn red when in contact with certain fabrics or threads. The most common irritants were car seat belts, rubber gloves and boots, nylon thread, underwear elastic, bra fastenings (I'm sure this is the reason for a large vitiligo patch I used to have on my back at this exact spot) and clothing labels. Naturally, the response to these irritations was often to scratch the itch, which I now know probably made matters worse.
I now realise that contact with these substances exposed me to multiple vitiligo triggers: firstly, the direct depigmenting effect of the chemical constituents themselves and, secondly, the Koebner effect that scratching can cause.
Some irritants are simple to avoid. For example, the only bare skin that routinely comes into contact with car seat belts is around the collar bone when wearing a lower neckline. So I always make sure I have a cotton scarf in the car to place between the belt and my skin. Labels are relatively easy to tackle too. The first thing I do with any new clothes is to cut off all labels. At first, I used to try to unpick the stitching so I could remove the entire label but most #clothing manufacturers seem to be so keen for their name to remain in the garment that they make them bomb-proof – so scissors are sometimes the only answer. The remnants of the label may still cause irritation though, so these tips on removing labels completely might come in handy.
But, whilst a number of other vitiligo sufferers have commented to me that their white patches are super-sensitive too, it would be interesting to know just how typical this actually is. So please let me know what your experiences are.
In any case, some clothing manufacturers have cottoned on (sorry!) to the fact that a significant proportion of the general population dislike scratchy tags next to their skin and have started to use "tagless labels" instead. This is good news, of course, but these brands are still in the minority and there is no guarantee that just because a garment is tagless it is also going to be free from other irritants and depigmenting agents. This is why I decided to feature Dermasilk undergarments on Vitiligo Store. They are mercifully free from scratchy labels and irritating elastic and nylon thread; they are made from a therapeutic dermatological silk that minimises friction and maintains healthy moisture levels; they have a permanent antimicrobial effect built in to the fabric and they provide a protective barrier between your skin and the garments worn on top, which means that you don't have to worry too much about what vitiligo triggers may or may not lurk in your everyday clothing.
Note: I was asked earlier this week to add knee-length undersocks to the range, which I have now done, so you can use these inside wellie boots in the same way as you use the therapeutic gloves inside your Marigolds or other household gloves. The seamless bra liner can also be worn under a regular bra to protect from the threads, labels, wires and clasps that can cause irritation. And the ladies' briefs and gents' boxers are an irritant-free, therapeutic alternative to regular underwear, which could be important for vitiligo sufferers, given that the groin area is a common site for lesions.
What's your trigger?
A lot has been written about the possible causes of #vitiligo. The growing body of published material appears to lead in so many different directions that you could be forgiven for concluding that medical opinion is hopelessly divided on the subject. Some research points to a genetic cause, some to autoimmune involvement, others to oxidative stress, others to trauma, whilst some implicate digestive disorders and yet others environmental factors. Confused yet? Don't be!
The more I read, the clearer it becomes to me that none of these theories is mutually exclusive. In fact, they all build up a picture of vitiligo aetiology that starts to make sense. Although different researchers are coming at the problem from different angles, there is a pretty good consensus on the point that there are indeed multiple causes and processes involved in the development of vitiligo and that, in the majority of cases, two or more of these need to occur in order for depigmentation to result.
The first of these factors is #genetic. Some individuals have vitiligo susceptibility genes, meaning that these are the people who are likely to develop vitiligo some time during their life. Typically, this will happen when they encounter certain #environmental triggers. These triggers create an autoimmune response in the genetically susceptible person which causes the body's immune system to attack its own melanocytes, resulting in lost pigment.
That much seems to be relatively clear. The complicated part – at least from my point of view – is identifying the possible triggers and avoiding them. Most of the known categories are listed in the opening paragraph of this post but how to avoid all of them is not always a simple matter. Here are some of my thoughts on each of them.
So, it's clear to me that I have no control over genetics and limited control over my tendency to autoimmunity but there is a lot I can do to reduce oxidative stress, trauma, poor digestion and exposure to harmful substances. My dramatic repigmentation after adopting a nutritional programme is proof enough for me that I can keep digestive triggers under control. And ever since then I have also become much more aware of the need to avoid environmental risks too. I now look closely at the labels on the household and personal care items I buy and the fabrics I come into contact with.
I have blogged on this topic several times before but I want to highlight it again because environmental triggers for vitiligo are rarely talked about by doctors and so there may be a lot of people out there who have vitiligo and are unaware that the products they use on a daily basis could be causing new patches of depigmentation or making existing patches worse.
Given that I have a genetic predisposition to developing vitiligo, I realise that I cannot afford to expose my skin to the same high street brands of highly chemically processed products that most people seem to be able to use without any apparent ill effects. Switching from commercial hair dyes and other toxic beauty products to natural alternatives that contain no known vitiligo triggers was one of the first things I did once I became aware of the dangers. Then I started to think about the importance of selecting fabrics that did not contain potentially harmful chemicals (like many commonly-used dyes and synthetic fibres). After all, our skin is in contact with the clothes we wear all day and then it is exposed to whatever our bedding is made of all night. So, unless we live in a nudist colony and sleep standing up, we are in direct contact with fabrics 24/7. This is why I decided to include therapeutic and protective, dermatological clothing and bedding in Vitiligo Store and why, having researched, sourced and tested the best products available, I would recommend them to anyone with a susceptibility to vitiligo, or indeed any chronic skin condition.
The first item I tried out myself was Dermasilk gloves as I felt my hands were a priority because:
a) they are repeatedly exposed to household products, detergents, etc.
b) maybe worse still, they are in regular contact with rubber gloves*
c) they are one of the most common sites for developing vitiligo, and
d) they are one of the hardest parts of the body to repigment.
*I now wear these comfortable, soothing gloves inside my rubber gloves for all household chores which has reduced my skin exposure to harmful chemicals to zero, including those toxic ingredients in the rubber gloves themselves. Not surpisingly, the way my hands feel inside the therapeutic gloves is the complete opposite of how they used to feel when I wore rubber gloves on their own. Instead of feeling hot, sticky and irritated (I regularly used to feel as if my rubber gloves were biting me - like an insect... has anyone else experienced that?) and emerging with that nasty warm rubber smell, they now feel cool, comfortable and soothed, however long I wear them, and have no unpleasant smell once removed. It's enough to make you want to do housework all day... well, maybe not!!! ... but it is certainly a very simple, pleasant and effective way to avoid many of the environmental triggers that I would otherwise encounter on a daily basis.
... 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!)
… as recommended by The Vit Pro
This week I am very excited - and, to be honest, a little bit nervous… (but in a good way!!!) - to announce the launch of Vitiligo Store: a new website offering products to help in the treatment and management of #vitiligo. The site went live four days ago with a modest number of items but I shall be adding new products on an ongoing basis, with the intention of creating a really useful one-stop-shop.
Of course, there are a fair number of vitiligo-related products available on the internet already – some excellent, some indifferent and some (sadly) downright bogus. So, discovering those things that can really improve your vitiligo and/or your general quality of life can be a bewildering, time-consuming and costly exercise. This is what prompted me to set myself the task of sourcing as many of the really good products as I can for Vitiligo Store. But I will only ever add them after I have tried and tested them myself and found them to be genuinely helpful and good value for money.
Among the first products to make it onto the site are, of course, the nutritional supplements that helped me to repigment my vitiligo five years ago (although these are still available via the links on this blog site as well, so you are welcome to continue getting them there). In addition, I have come across a number of other really beneficial products as a result of researching my blog posts each week and have included several of these in the store right from the start because they have impressed me so much. These include dermatological, therapeutic clothing and bedding, Viticolor skin camouflage gel and Vitix repigmentation gel.
You may have seen my first blog post on the subject of Vitix and Viticolor in May of this year, when I initially started to test them on my few remaining patches of uneven pigment. I promised then to write a follow-up post once I had given the products a good trial period. Well, I will be posting that in the next few weeks, so watch this space...
In the meantime, please do drop in to Vitiligo Store for a browse around and bookmark it so you can keep checking on new arrivals as they are added. I really hope that you will find the products and the information on there beneficial and that it will become a resource that will increasingly enable you to find some of the best and most relevant vitiligo #solutions without the usual hassle.
My name is Caroline.