Safer than sunbathing, as long as you choose a good UV lamp and use it properly
Following on from last week's blog post, I'd like to add some information about #home-phototherapy safety because it is a serious medical treatment and needs to be approached with care and common sense.
Thinking about this whole subject of taking our vitiligo (or psoriasis) treatment into our own hands, it seems to me that staying safe boils down to 3 key considerations:
Am I a good candidate for home phototherapy?
UV therapy has one of the best track records of all treatments for #vitiligo and #psoriasis, so if you have been diagnosed with either condition there is a good chance that phototherapy could be of significant benefit to you. In particular, narrowband UVB is known to stimulate the formation of pigment in vitiligo and to produce faster and longer-lasting improvements in psoriasis than any other UV bandwidth. This is because it uses wavelengths of 311 - 312 nanometres only (the most beneficial component of natural light), meaning it eliminates unnecessary and potentially harmful UV exposure. I don't know enough about how or why it is so successful in treating psoriasis but, in the case of vitiligo, its effectiveness is largely due to the fact that this narrow bandwidth allows new pigment to form in less time than it takes for the skin to burn. In this sense, it is much safer than sunbathing - which is how I obtained my UV exposure when I first started to repigment - because it is carefully targeted and scientifically administered in a way that sunlight can never be, enjoyable though basking in the sunshine undoubtedly is.
In my opinion, the safest way to approach phototherapy, if you are thinking about it for the first time, is to consult with your doctor to make sure it is appropriate for your particular case. Unfortunately, not all general practitioners and dermatologists fully appreciate the massive difference it can make to a person to have new hope and to see even partial improvement in their skin condition. Some are reluctant to refer for outpatient UV treatment and even more unlikely to prescribe home therapy. So don't be afraid to ask for a second, or third, opinion if you feel your request is not being taken seriously.
Ideally, phototherapy should take place in a hospital or clinic environment under full medical supervision, at least to begin with, because this ensures nothing is left to chance and enables the individual to ask questions and learn about how the treatment works, what results to expect and how to avoid any potential pitfalls. However, it isn't always feasible to have this kind of outpatient treatment, which is why new and improved home phototherapy devices have been developed which allow us the flexibility to treat ourselves at home with equal success and equivalent safeguards.
This well-researched article - A Practical Approach to Home UVB Phototherapy for the Treatment of Generalized Psoriasis - which is just as relevant to vitiligo, puts the subject into perspective and I would highly recommend reading it if you are considering home treatment for the first time. It offers important advice, covers some crucial safety issues and points to the fact that many doctors are unjustly suspicious of home phototherapy. The article ultimately concludes that:
"Home phototherapy is convenient, cost-effective, and associated with better quality of life compared to outpatient phototherapy […] However, few dermatologists have embraced home phototherapy. When asked why not, they cite inferior efficacy and higher risk, despite the lack of evidence to support these assumptions."
Is my chosen UV device appropriate?
Given that safety and effectiveness should be top priorities in any medical treatment, it makes sense to select a home device very carefully to ensure that it is the right type of product for your needs and that it is good quality. If you were to have this kind of treatment as an outpatient you would quite rightly assume that the hospital has the best equipment for the job. Admittedly, we are likely, as individuals, to have a much more limited budget for our purchase than a hospital but we would be very foolish to compromise standards of quality and safety in favour of the lowest price on the internet. If a UV device is on sale at an amazingly low price, you have to ask yourself why.
If you live in the USA you will need to get a doctor's prescription before buying a home phototherapy unit in any case, so you will probably be able to get advice from your doctor as to what is and isn't suitable.
But for the rest of us here are some quick tips on making an informed choice:
Am I willing to use it responsibly?
This is the factor over which, in theory, we have the greatest control but which, ironically, can carry the most risk. So I think it is important to be really honest with yourself. If you are the sort of person who has difficulty being disciplined, paying attention to detail and sticking to routines, I don't recommend you attempt UV treatment at home, unless you can get medical supervision to back you up. You will be better off as an outpatient or simply getting moderate sun exposure. But, if you are highly motivated to improve your condition and willing to follow the safety instructions that come with your device to the letter a home phototherapy unit could be the perfect way to benefit from UV treatment without the inconvenience of having to visit the hospital three times a week (usually during working hours).
If you have never had phototherapy before it is important to understand a bit about how it works and why the dosage is very gradually and precisely increased at each session. It also helps to know what effects to look out for (e.g. your skin should look slightly pink, following a treatment, but should not feel sore). And you should understand what to do if you miss a treatment by more than a couple of days (i.e. reduce the time/dosage of your next treatment accordingly so as to avoid burning.) All of this information will be available if you obtain your product from a reputable source. And the final word on this is, if you are in any doubt about any aspect of using your device, ask the manufacturer and/or your doctor for advice.
The home phototherapy devices currently available from Vitiligo Store to residents of the UK and Europe can be found here. Hand-held and small panel devices are also available for residents of the USA and Canada by using the contact form on the site. Prices and insurance arrangements can be accessed on request.
The Vit Pro's choice of UV lamps
I shall start this week's post by asking you to indulge me for a moment while I tell you that the latest addition to Vitiligo Store is home UV phototherapy lamps. As you may already know, my aim in setting up this shopping site is to provide tried-and-tested products, all under one “roof”, that can help improve the health and quality of life for those of us living with #vitiligo. Years of trying different treatments and other vitiligo-friendly items myself, using the “hit and miss” method of research, left me wishing that there was one place I could go to put all the products that I have found to be 1) effective, 2) good quality and 3) value for money into my shopping cart in one go. Vitiligo Store is my attempt at creating such a place. The site is still very new and I have a long wish-list of future stock items I would like to add. But, so far, I have been adding products more or less in order of priority, based on my own experience of what has helped me the most over the past few years of repigmenting and keeping vitiligo at bay.
To recap, the first products to go onto the site were the nutritional supplements that triggered my recovery 5 years ago and that I still rely on today. Next I wanted to include the only topical treatment I have ever used that actually worked for me and that made good scientific sense. I have also discovered, and added, more great products along the way that can help protect against some of the triggers that are known to cause or worsen vitiligo (like Betaine supplements for low stomach acid and dermatological and protective clothing and bedding).
And now that the sunshine has all but disappeared for the winter (at least where I live!) it seems like a good time to look at options for those of us who want to continue to benefit from the #UV exposure we enjoyed during the summer, or else try #phototherapy in our own home for the first time. Natural sunlight was an integral part of my recovery during the summer months and the rate at which my vitiligo repigmented once I switched to narrowband UVB therapy over the winter increased significantly. So I would definitely consider UV devices to be an important addition to the site at this time of the year. However, please read on (or refer to the site) for some safety recommendations, because these devices do need to be used responsibly if no medical supervision is on hand.
As with all the products on Vitiligo Store, I have included additional information and some personal tips along with the individual product information you would expect to find, which I hope will be useful for anyone considering home phototherapy. I have also copied some of this information below...
Why are these products in Vitiligo Store?
UV phototherapy is one of the most widely used and effective treatments for vitiligo and can be used alone or in conjunction with topical, oral or nutritional therapies. The ideal way to obtain UV light therapy is under qualified medical supervision. But many people who might benefit from this do not have a local facility that offers phototherapy and, for many, the cost and time commitment required to undergo treatment at a hospital or clinic are prohibitive. Natural sun exposure can deliver some of the same benefits but the limitations of this option are obvious: few people enjoy a climate offering year-round sunshine; exposing one's body in public is not always practical or acceptable; and it is hard to judge the strength of the sun and the optimum, safe duration of exposure. Faced with these obstacles, some vitiligo sufferers mistakenly think that the answer is to use a commercial sunbed. Dermatologists strongly advise against this because of the dangers of sunburn and of developing skin cancer. Most importantly, commercial sunbeds are not designed for medical use and should be avoided, just as excessive natural sunbathing should be avoided. The best option for anyone who does not have access to medically supervised phototherapy for their vitiligo (or psoriasis, atopic eczema, etc.) is to use a high quality medical device at home and to adhere strictly to the safety and usage instructions supplied with it. By using one of the home UV devices available from Vitiligo Store in this responsible way, the quality, methodology and controlled application of UV therapy you can obtain will be comparable to the treatment you would receive from your medical provider, and a lot more convenient.
How does it work?
The success of UV phototherapy in general, and narrowband UVB in particular is well documented, making it one of the most widely used treatments for vitiligo, psoriasis and a number of other skin conditions. The medical bulbs in the UV device emit ultraviolet (UV) light at a very precise wavelength that stimulates skin cells. In response, the cells are apt to return to their normal state again, which can reduce or even eliminate the symptoms of the skin disease being treated.
Tips from The Vit Pro
What our pigment-producing cells do in their spare time
I stumbled on an intriguing five year old essay the other day when the light-hearted title “What are melanocytes really doing all day long…?” caught my eye. For those of us with an interest in #vitiligo, any mention of these pigment-producing cells always attracts our attention. The question posed by this title immediately conjured up a comic image in my mind of vitiliginous melanocytes lazing around in their pyjamas all day, watching TV and eating junk food instead of doing their job of producing melanin!
I was on my own in the house at the time I read it and so I had no inhibitions about talking aloud to myself (something I seem to do more and more as I get older!). I found myself making remarks like “huh... I never knew that!”, "well I never!" and "oooh - now that's interesting!".
The essay is quite short and not too technical, so it's well worth a read. It's not actually on the subject of vitiligo but it did leave me with some relevant and fascinating thoughts rattling around in my head. It revolves around the question, what do #melanocytes do in their spare time? (i.e. when they are not producing skin pigment and protecting the body from UV damage). The answer, it seems, is plenty: at least a lot more than I was aware of and probably a lot more than scientists fully understand even now. Apparently, melanocytes can be found in all sorts of unexpected organs of the body, doing all sorts of unexpected things. (Read the essay for the detail.)
This information left me wondering if the loss of functioning melanocytes that occurs in vitiligo is, in fact, (as everyone seems to assume) limited to the skin, hair follicles and eyes or whether it also occurs everywhere else in the body where melanocytes are known to exist – i.e. the ears, brain, heart, lungs and fatty body tissues. This is not a particularly happy thought, I know. But it causes me to wonder (and not for the first time) if medicine has fallen into the trap of categorising vitiligo simply on the basis of what we can see from the outside - a "harmless" skin condition - and made the assumption that what we can't see can't hurt us?
I am usually the first person to be upbeat and proactive on the subject of vitiligo because I have been very fortunate in recovering most of my lost skin pigment and I do not believe those who say there are no solutions for vitiligo. But I can't help wondering, on the basis of this essay, whether the melanocytes elsewhere in my body are as fit and well as those in my skin, and – if they aren't – what the possible implications of this might be for my general health.
I hope that these thoughts don't depress you if you have vitiligo. That is not my intention. After all, none of us really knows everything about what goes on inside our body anyway, just as none of us knows if we might be run over by a number 49 bus tomorrow either, so cheer up, everyone! I certainly don't mean to spread doom and gloom by pondering these questions. But I do think they are interesting food for thought and maybe for future research too. And, let's face it, the more thought and research that goes into vitiligo, the better the outlook for all of us who are affected by it.
So why do doctors not treat it like other autoimmune conditions?
Assuming that #vitiligo is usually, if not exclusively, the result of an autoimmune response, it is not surprising that no magic pill to cure it has yet been found. As far as I can tell from searching the net, one of the features that all autoimmune diseases have in common - apart from the faulty immune response itself - is the total absence of a cure.
Given this fact, anyone diagnosed by their doctor with diabetes, thyroiditis, lupus or psoriasis can expect to be told not to worry about their symptoms but to go home and forget about them, right? Wrong! Where appropriate, they are prescribed medication and, in most cases, given advice on the various therapies, lifestyle and dietary changes that can help to keep their condition under control. Yet, in the vast majority of cases I hear about, newly diagnosed vitiligo patients are told that their condition is not life-threatening, that little or nothing can be done about it and that what can be done will probably only be of temporary benefit.
Practitioners of alternative therapies, on the other hand, have long understood that #autoimmune illnesses (including vitiligo) can be managed, with varying degrees of effectiveness, ranging from slight improvement (any improvement at all is a welcome relief, in my experience) to total remission if protocols are kept in place. So why is it that our mainstream western medical establishment is so poor at offering non-drug-related therapies and advice for autoimmune disease in general, and for vitiligo in particular?
Well, if I were a complete cynic I would probably say that the powerful profit motive created by the drug companies has something to do with it. If I were less cynical I would guess that the average family doctor is just too busy to spend time on complex, hard-to-treat cases where one size does not fit all. In reality, I think there is more than a grain of truth in both explanations. But neither one gets to the heart of why vitiligo patients in particular are so poorly served by conventional medicine. It can't simply be down to the fact that it is "incurable". Autoimmune thyroid disease is incurable, pernicious anaemia is incurable, as are Addison's disease, diabetes mellitus, lupus, alopecia areata, rheumatoid arthritis, psoriasis and any other autoimmune illness you care to name. And, although conventional treatment of these usually fails to take a holistic approach (which I fervently believe that it should) it does at least take the health risks associated with them seriously. The same cannot be said for vitiligo, which leads me to think that the main reason for inferior vitiligo care is ignorance.
I believe that most general practitioners - and even many dermatologists - are simply not sufficiently knowledgeable about vitiligo. Of all the autoimmune conditions they see on a regular basis, they seem to understand vitiligo and its effects on sufferers least. They often appear ignorant of the potential seriousness of the other physical and psychological implications of the condition. All too often, they do not investigate the likelihood that their vitiligo patients have other autoimmune conditions or other underlying health problems that may be triggering their pigment loss and they totally underestimate the psychological impact that loss of skin colour has on most individuals and in many cultures. In short, they mistakenly think that the only symptom of vitiligo is the patchy loss of skin colour and so they relegate it to the category of annoying but harmless skin complaints.
The down side of this state of affairs is that it leaves the door open for all sorts of unscrupulous marketeers to plaster their irritating and patronising scribble videos and endless sales pitches all over the internet promising what we all know does not exist – a guaranteed vitiligo cure. But, on the positive side, it has led to vitiligo friends joining together globally on forums and social media, giving mutual support and strength, swapping tips on what has and has not worked for them. And it has led to the emergence of many, genuine and safe therapies and self-help protocols that are helping sufferers to take the management of their vitiligo into their own hands and improve their confidence and quality of life.
For those of us who have found that the only way of being proactive in our search for better health is to do our own research, gain as much knowledge from credible sources as possible, apply some logic, and even indulge in a little (safe) self-experimentation from time to time in order to find the vitiligo solutions that work for us, the experience can seem laborious. But it can also be a fascinating and satisfying journey of discovery and self-knowledge in a way that seeing your doctor and being handed a prescription for magic anti-autoimmunity pills would not (nice though that would undoubtedly be)!
How checking for hypochlorhydria could save your skin
I used to be slightly skeptical about #vitiligo being an autoimmune disease, mainly because no doctor had ever mentioned this to me (and still hasn't to this day!). When I was first diagnosed, as a child in the 1960s, the idea that antibodies could attack a person's own cells was still a relatively new theory and had definitely not reached the average family doctor's surgery. Even after I had heard about #autoimmunity, I still didn't feel that my vitiligo necessarily fitted the autoimmune model. This was really only because I eventually managed to rid myself of nearly all my white patches simply by taking certain nutritional supplements (and sitting in the sunshine) which led me to the conclusion that the progressive pigment loss I had suffered throughout my life was simply due to some mysterious deficiency of nutrients that my body required to make melanin. It was easy enough to identify the likely reason for this deficiency, since I had always suffered from symptoms of poor digestion and fatigue that suggested I was not absorbing enough nutrition from my diet. I am still certain that this was the key part of the picture. However, it was a simplistic explanation for what is obviously a much more complex condition.
Once I started to read up on vitiligo research, I realised that the evidence for an autoimmune connection was overwhelming. But what wasn't at all clear was if and how this aspect of the disorder fitted in with the nutritional side of things. Was the autoimmunity a genetic defect, which then led (in my particular case) to digestive problems? Or did the cumulative effect of improperly digested food lead to an autoimmune response in which the vitiligo gene allowed my immune system to mistakenly attack my pigment-producing cells? Researchers in this field still don't have all the answers (hence the absence of a cure) but the prevailing view would tend to support the second scenario. In other words, there was a domino effect:
I'm not saying that there is necessarily a digestive dimension to all cases of vitiligo. There are most likely various triggers, as I discussed in a previous post. However, so many of the people I correspond with about their vitiligo tell me they have chronic digestive symptoms that I get the impression it is one of the most common triggers. Certainly, vitiligo (and other autoimmune diseases) are frequently linked to hypochlorhydria and, given that it is possible to have low stomach acid and not experience noticeable symptoms, I think it is a pity that doctors do not routinely test for it whenever they see a new patient with vitiligo - especially as hypochlorhydria is so easy to treat with betaine HCL.
It is now thought to be statistically more likely that an individual who experiences symptoms of indigestion will have too little stomach acid, not too much, and the risk of deficiency only increases with age. It is also statisitcally more likely that individuals with vitiligo or other autoimmune conditions will have hypochlorhydria. So it does strike me as a serious oversight on the part of the medical profession not to make all vitiligo patients aware of the fact.
Insufficient stomach acid means that the body is unable to absorb iron, calcium and magnesium, essential antioxidant vitamins like C, A and E, and vitamin B12 (common deficiencies in vitiligo). It also means that proteins are not broken down and digested properly. It is this, when left untreated, that is thought to lead to numerous chronic diseases, food allergies, leaky gut syndrome, and autoimmune conditions including vitiligo.
What can often make matters even worse is that most people who routinely suffer from poor digestion reach for the antacids because the symptoms of too little stomach acid are, confusingly, identical to those of hyperchlorhdria (too much acid) and so they mistakenly reduce acid levels in the stomach even further.
Anyone with low stomach acid should avoid indigestion remedies (antacids) like the plague and take measures instead to increase acid levels at meal times. Drinking some apple cider vinegar or lemon juice before eating is enough to help some people if their hypochlorhydria is not severe. But the ususal treatment is to take an appropriate amount of Betaine HCL in tablet or capsule form with meals (especially those meals that contain protein). This provides the stomach with the right levels of hydrochloric acid to be able to digest food properly, absorb nutrients for the maintenance of good health and to empty the stomach effectively (thus avoiding acid reflux or heartburn). It also creates the right environment to sterilise the stomach and kill bacteria and yeast that may be ingested, reducing the risk of candida and other forms of bacterial overgrowth, which can also be common issues for vitiligo sufferers.
It is advisable to take a betaine product containing pepsin if you are not already taking a separate digestive enzyme supplement.
It is a big topic - one I will probably revisit in future posts - but I think one sentence from this site highlights the seriousness of hypochlorhydria as clearly as any other: "Low Stomach Acid Causes the Body to Attack Itself!"
My name is Caroline.