This is the first of a series of posts which I hope will be useful to all those vitiligo detectives out there who are looking for the underlying cause of their pigment loss.
Until very recently I was only vaguely aware that vitiligo could be linked to problems with the liver. No doctor or dermatologist I have consulted about my vitiligo has ever suggested I have a liver function test and the connection only rarely appears in online search results.
However, a Facebook message I received the other day from a vitiligo contact about her son’s pigment loss being linked to liver disease rang bells with me. I suddenly remembered that three separate complementary health practitioners (an acupuncturist, a Chinese herbalist and a Reiki Master) had all, at different times, told me they could detect a problem with my liver but I had not taken any action as a result of their comments.
The lady who contacted me told me that her 19 year old son was diagnosed with vitiligo about 5 years ago and that it had since come to light that he also has an autoimmune liver disease. He had not had any symptoms of liver dysfunction and so the problem would have gone undetected had his dermatologist not been thorough in the tests he ran and found elevated levels of liver enzymes. Since then he has been on treatment for his liver condition and, happily, his pigment has been returning.
She went on to say Since November 2013, when he started the treatment, his pigment has been returning. In fact, it was an accidental sunburn on his arms that proved that his pigment was still there. As time has passed, we've been experimenting with sun exposure and it's working. We saw his liver specialist last Monday and she was shocked at how much pigment has returned and how it coincides with his liver treatment. She said she's heard of people with liver transplants having their vitiligo disappearing, but had never seen it with just treatment with pills alone. The point of my message is: 1) ANYONE with vitiligo should insist their liver be thoroughly tested to eliminate a liver disease. and 2) Vitiligo isn't necessarily its own autoimmune disease. We were told that my son had 2 autoimmune diseases--vitiligo and autoimmune hepatitis. He doesn't have 2, he only has one disease and it's autoimmune hepatitis. The vitiligo is a side effect of his liver. I hope his story is helpful and/or informative to you. I kept pushing for answers to my child's vitiligo and I got them. There's a reason that a link in the chain of skin pigment is broken. It might start in the liver or somewhere along the way, but there's always an underlying reason.
I would like to thank this lady for contacting me. (I have not named her, out of respect for her privacy and her son's, but she did kindly indicate that she hoped the information she gave me would help others with the condition.) For her son, the development of white patches was almost certainly a blessing in disguise - a message his body was sending to say that something internal was amiss. Even though my vitiligo has virtually gone, I will still be asking my doctor for a liver function test to see if there is a problem as the three complementary practitioners suggested.
This academic article adds context to this young man’s experience.
I have copied and pasted some of the text below for quick reference:
DYSFUNCTION IN THE BODY’S second largest organ, the liver, often yields changes in the body’s largest organ, the skin. If we can recognize these manifestations early, we are better able to promptly diagnose and treat the underlying liver disease, as well as the skin lesions.
The liver has many jobs: synthesizing proteins such as clotting factors, complements, and albumin; neutralizing toxins; and metabolizing lipids and carbohydrates. Insults to the liver can compromise any of these functions, affecting visceral organs, joints, gastrointestinal tissues, and the skin. Dermatologic signs of specific liver diseases include alopecia and vitiligo associated with autoimmune hepatitis, and xanthelasma in chronic cholestatic liver disease.
Thankfully, there is a lot more medical #research going on today to find a cure for vitiligo than at any time in the past. However, I can’t help thinking that what people with vitiligo need more than anything – especially when they are first diagnosed – is a doctor who is willing to do a bit of detective work.
For reasons I simply don’t understand, most mainstream doctors continue to approach vitiligo in isolation - as if it is a disease in its own right, without doing (or even considering) any significant investigation into whether you might have another, underlying condition that is causing your loss of pigment.
Some, more enlightened, doctors will routinely check for diabetes or thyroid disease. But, for the most part, that is as far as it goes. The advice generally given to the newly diagnosed is simply that there is no cure for vitiligo and that the patient should avoid getting sunburnt and otherwise not worry about it.
If you are very lucky indeed your doctor might refer you for UV therapy. This is all well and good, since it does seem to achieve better results than most treatments available to patients today. But, sadly, most people who achieve any re-pigmentation using either UVb or PUVA apparently lose whatever they have gained once the treatment has ended. This is not surprising, since exposing the skin to light is unlikely to address the root cause of your vitiligo.
I correspond with a large number of other vitiligo sufferers as a result of my blog and I have never yet come across anyone who has told me that their General Practitioner or Dermatologist has run exhaustive tests to rule out all the other conditions that are known to have a link with pigment loss. I almost never hear of anyone who has even been asked what other symptoms they may have. In fact, if you try to tell your doctor about your IBS, chronic fatigue or arthritis and suggest there might be a link you will probably get one of two responses (unless you are dealing with a holistic practitioner). The doctor will either give you a patronising smile and say “I think that is rather unlikely, don’t you?” or they will tell you that you will need to make a separate appointment to discuss each health issue due to pressure of time.
Don’t get me wrong, I don’t have it in for hard-working doctors. Our mainstream health system just isn’t geared up for treating people as individuals– it is designed to treat individual symptoms… individually!
So, where does all this leave the patient? One option is to accept what you have been told by your over-stretched and well-intentioned doctor and resign yourself to having white patches (and possibly an untreated causal illness too) for the rest of your life. I did this for a long time and I wish I hadn’t because I now believe I could have found a successful treatment much sooner if I had been more proactive. The other option is to follow in the footsteps of Sherlock and do some detective work of your own to track down, and treat, the underlying cause of your vitiligo.
When I was first diagnosed, almost 50 years ago, there was no easy way to do this. But today the internet allows us all to read up on the various conditions believed to be linked to vitiligo which may – if treated – allow you to regain your pigment. I have been lucky enough to recover about 98% of mine - permanently - by addressing the nutritional deficiencies which I believe led to my vitiligo. But, as an avid reader of any credible anecdotal reports and scientific research that I can find on the subject, I continue to do whatever detective work I can to find out more and will continue to share as much of this as I can on this blog. Hopefully, I can do my bit to encourage more of us to become vitiligo detectives.
Researchers in the UK and the USA have completed some research into the effects of Facebook use on women’s body-image and their findings are actually the opposite of those I would expect if they had conducted the same research on vitiligo sufferers.
They found that more time on Facebook can lead to low self-image (at least among college students) because of a perception that others have better bodies and more beautiful faces by comparison with themselves.
881 female college students were surveyed about their Facebook use, eating and exercise habits, and body image. The results of the surveys enabled the researchers to predict how often the women felt negatively about their own bodies after looking at someone else’s photos or posts, and how often they compared their own bodies to those of their friends.
The study showed that the amount of time spent on Facebook was directly related to the severity of negative feelings and unfavourable comparisons. In particular, for women who want to lose weight, more time on Facebook led to more attention being paid to physical appearance.
In itself, this is obviously not a healthy phenomenon. However, on the other side of the coin, I would be very interested to know (if anyone fancies funding a study into this) to what extent Facebook – and social media in general – has the opposite effect on those people who have vitiligo.
I know that before the age of the internet, when my vitiligo was at its worst, I felt completely alone, as though no one else in the world could possibly be going through the same experience as me. As far as I could see everyone else was normal and I was a freak. I was convinced that no one else would be able to look at me without my makeup and carefully chosen clothing and find me remotely attractive.
But (ironically for me, now that my vitiligo is virtually gone) today there are scores of vitiligo support pages on Facebook, plus hundreds of other sites and forums on the internet where vitiligo friends can swap photos, tips, experiences and encouragement and where comparing one’s appearance with others actually reinforces a sense of belonging and normality and where people can start to see beauty where they never saw it before – in the mirror.
In my previous two blog posts I described how to use natural henna as a self-tan on white vitiligo patches. This is something I have recently experimented with as I still have a few freckled areas of white skin on my hands and feet, despite the fact that the pigment on the rest of my body and face has returned.
In this post I want to tell you about another cosmetic way of providing some colour to your de-pigmented skin – this time, from the inside. First of all, I must stress that this solution probably works best on fair skins because of the lesser contrast between the vitiligo lesions and normal skin. But, if you have darker skin you may still get some benefit from it.
There is a nutritional supplement capsule called Bronze which I started to use at the same time as the other supplements that brought about my re-pigmentation four years ago. They were on the same product range and when I read that they were designed to develop a light tan with or without sun exposure, I decided to give them a try in case they had any beneficial effect on vitiligo.
It contains 5 natural carotenoids (the natural pigments which are synthesised by plants and are responsible for the bright colours of various fruits and vegetables) as well as essential amino acids and the important skin nutrient vitamin E. So I decided it was likely to have a generally beneficial, antioxidant effect at the very least. The idea is that it is a much safer way of tanning the skin than using a sunbed. It takes about two weeks to build up sufficiently in the body to produce a tanning effect on the skin and then you reduce the dosage to a maintenance level.
My impression of using this product is that it does not appear to stimulate pigment production (I believe that Boost and Five a Day+ were the active supplements responsible for this) but it does have a small but significant cosmetic effect - almost like a dye - which creates the appearance of a very light tan. The amount of colour it creates is probably comparable to a light coating of self-tan or one of those moisturising body lotions that gradually build up a light tan.
When I started using this supplement I fully expected it to only work on those areas of normal skin but it actually does work on the white patches too. And, strangely enough, instead of maintaining the contrast between the vitiligo and the normal skin by tanning both equally, it definitely reduces the contrast (I’ve no idea how or why). It may not be anything close to a total camouflage, but I think the benefits are that it is healthy, high in antioxidants (which anyone with vitiligo needs) simple to take, no mess or fuss, and it does reduce that blindingly white or pink/white look that vitiliginous skin typically has and turns it more of a creamy, flesh colour. Definitely worth a try.
As promised in part 1 of this blog post, I am going to describe how to use henna to help camouflage white vitiligo patches. I discovered that this works quite well as a safe, chemical-free self-tan when I started to use it to colour my hair. I had used mainstream, chemical-based hair dyes and self-tans for decades before I realised that the very products I was using to camouflage my vitiligo were almost certainly contributing to my de-pigmentation by causing oxidative stress and irritation. Chemical hair dyes always used to make my scalp sting whenever I applied them and they used to leave itchy, raised bumps afterwards that never really went away between applications. Self-tans have never produced these reactions but they do share some equally undesirable ingredients that I would recommend vitiligo sufferers avoid.
So, nowadays, every time I dye my hair I use natural henna bricks from Lush and simply use up the residue to stain the remaining few mottled areas of skin. It must be said that the process is a little messy and would not be suitable for a full-body tan (unless you were willing to stand up in a tiled room for 2 hours waiting for it to develop!) but it’s fine for small areas like hands and feet.
There are currently three colour choices – marron (quite a red chestnut brown), brun (a darker brunette) and noir (black). A certain amount of experimentation may be required to achieve the colour you like best and you can custom-blend two or all three together. The only thing you can’t do with 100% natural henna, of course, is go lighter than your natural hair colour. But, since we are talking about camouflaging white hair and vitiligo patches, that’s not really a problem.
Lush provide good instructions on how to use their henna bricks and they provide protective gloves (surgical-style ones). These come in useful if you want to camouflage white patches on your hands… I will explain how in a moment. My local branch even gave me a free sample of their Ultrabalm (a natural alternative to petroleum jelly) to protect the hairline during the colouring process.
Preparation of the henna is quite straightforward. You simply chop up the brick into smallish pieces, put them into a heat resistant bowl in a pan of very hot water (a “Bain Marie”, basically) and add some more very hot water from the kettle. Then you stir and add enough hot water until you achieve the consistency and glossy appearance of thick hot chocolate. This henna product does contain cocoa butter so it actually smells a little more like chocolate and (mercifully) a little less like henna!
Using the mixture while it is still as hot as you can safely bear, you then systematically part your hair and apply the henna in exactly the same way as you would if you were using a chemical dye, making sure you coat every hair from tip to root. Of course you wear the gloves provided and can use either a brush or fingertips to apply the product. If you want to maximise the red tones in the henna wrap your hair in cling film or a shower cap. Alternatively, if you want a darker, browner shade leave it to develop without covering.
Once I have finished dying my hair, I then clean and dry the gloves and apply the remaining henna mixture to the white patches on my hands and tops of my feet (these are the only areas of vitiligo I still have left after re-pigmenting). I then wrap cling film over my feet (this always strikes me as one of the weirdest things a person can do!) and very carefully pull the gloves back on over my henna-painted hands. You could leave your skin uncovered if you want to avoid the self-tan being too red. But, since I naturally have auburn hair, I don’t mind this. The main reason for covering up hands and feet is so that I can then get on with doing whatever I want to do around the house for the next two hours while the colour develops.
After a couple of hours you then shower and shampoo in the usual way. Henna will leave your hair really glossy and in great condition because it actually coats and protects each hair. However, be warned that during application and when rinsing out afterwards it will feel as if you have caked your head in a pile of gritty horse manure… don’t worry – everything will feel fine once you have thoroughly washed the henna out!
A henna hair colour will last as long as it takes for the colour to grow out (just like a chemical dye) and the effect on the skin when used as a self-tan is several days – maybe a week (again, similar to a chemical-based product). Results will obviously vary according to your original hair and skin colour and according to the shade or shades of henna you use. But then, half the fun is experimenting… feel free to send me photos of your results!
My name is Caroline.