A more holistic approach to vitiligo
Doctors the world over are fond of telling us that #vitiligo-is-incurable. I get the impression that many of them have memorised their lines from a Common Book of Incurable Diseases and How to Deal With Them – or rather, not deal with them. The relevant chapter is probably called How to persuade vitiligo patients to shut up and suck it up and the subheadings include There is no cure, so don’t bother; Stop whining - it won’t kill you and Don’t talk to me about nutrition!
I know, I know. That’s a little harsh. But I feel strongly about this. I do realise that not all doctors quote from that particular book. But therein lies another problem for vitiligo patients. Medical opinion – and, more crucially, levels of medical training – on the subject of vitiligo are so unreliable and inconsistent that going to see your doctor is like a lottery. And the only thing you can be reasonably sure of is that your chances of winning a prize of any real value are slim.
I really think it is high time that the mainstream medical profession brought its general practitioners and specialists up to date on current best practice in addressing vitiligo and worked out a consistent protocol for helping patients who come to them with this neglected and underfunded condition. It is simply not good enough that people with a health issue that, for many, is frightening, depressing and psychologically devastating have to take pot luck on whether or not their family doctor or dermatologist will be well informed, or even remotely sympathetic, about it. It is not acceptable that so many people leave the doctor’s office confused and discouraged because of a lack of helpful information, a lack of support and an unwillingness on the part of the professional to even try to get to the bottom of their complaint. Many vitiligo patients are not even offered a referral to a dermatologist. And those who are often encounter similar indifference or negativity from that specialist too. (I know this is not universal but it is, I’m sad to say, all too common.) Other, more well known health conditions would not be met with such a dismissive response, so why should vitiligo be different?
I am not medically trained, so I accept that I am not remotely qualified to tell the medical profession how to do their job. But, like most people, I have been a patient on numerous occasions and I speak to a lot of others who have fallen foul of the way in which the system currently works (or doesn’t). In a way, you could say I owe my recovery to the ineptitude of the medical establishment. Their total lack of support led me eventually to experiment with nutritional treatment on my own and this is what almost completely restored my normal skin colour. But most people – reasonably enough – turn to their primary health provider when they first notice the symptoms of vitiligo. They deserve to have access to a doctor who is current, well informed and constructive. And they deserve to be told all of the available options and given the opportunity to see a specialist or ask for a second opinion.
But what kind of specialist does a vitiligo patient need?
A major reason why mainstream health care has never properly got to grips with addressing the needs of vitiligo patients is because it is a condition that defies being put into a neat and tidy category. Its root cause is still unclear but most evidence suggests it is multifactorial (involving many different factors – i.e. it's complicated!) For starters, there are several different forms of the condition (segmental, non-segmental and occupational / chemical). The majority of cases are thought to involve autoimmune disease, but not all of them do. No single treatment works for everyone. And the causes (plural?) appear to be a combination of genetic, digestive, environmental, hormonal, allergic, etc, etc, etc… In other words, it involves several of the body’s systems: just how many is still a matter of debate. In other words, if ever a condition required a holistic approach, it would be vitiligo. And that is just what our western health care systems are not geared up to provide.
If you are lucky, you can get a referral to a dermatologist. But how appropriate is that? You don’t have to read much of the available research into vitiligo to realise that the white patches are the last and only visible symptom of a disease process that starts inside the body and involves the digestive and endocrine systems at the very least – probably also the lymphatic and nervous systems too. So how many experts are there who are specialists in all of these disciplines? The only individual specialists who would stand a chance of taking a wider view of vitiligo are probably the researchers who, in most cases, do not routinely see patients at all. What the vitiligo patient really needs is a multi-disciplinary approach.
What can be done to improve things?
The current situation may sound hopeless. It is certainly challenging. But I do believe that an overhaul of the way in which vitiligo patients are handled is possible and would certainly be helpful. If new procedures were introduced that included routine testing for all the known factors in vitiligo and referrals made on the basis of the results, patients would be far more likely to get access to the most appropriate specialist expertise and therefore to the treatments that would most likely benefit them. Based on my own experience of vitiligo-recovery, I believe that the most effective treatments available so far all involve nutritional therapy. So, in an ideal world, all vitiligo patients who go to their primary care doctor would then be routed through the secondary care system, being referred from one relevant specialist to another, as appropriate, according to the results of their various tests. And one of these should, in my humble opinion, be a nutritional specialist who would then devise a programme for each patient that would address the particular type and source of their pigment loss.
Realistically, I do not expect we shall see anything like this being implemented by our mainstream health systems any time soon (and maybe never!). But any improvement to the existing quality of patient care would definitely help. The need for a multi-disciplinary approach to vitiligo research has already been documented, as this article shows: Valle, Y., Lotti, T. M., Hercogova, J., Schwartz, R. A. and Korobko, I. V. (2012), Multidisciplinary approach to R&D in vitiligo, a neglected skin disease. Dermatologic Therapy, 25: S1–S9. doi: 10.1111/dth.12009 but it seems to me that the need for an equivalent rationale to clinical practice has simply not been recognised. Until it is, most vitiligo sufferers will continue to receive inconsistent and unreliable support from their doctors and face the choice of either putting up with the condition or, like me, finding their own solutions and treating themselves.
Investigating the mystery of vitiligo
I don’t remember exactly when my addiction to detective stories began. It might have been back in the 1970s, when I first started watching the disarming and dishevelled homicide detective Lt. Columbo relentlessly hunting down his prime suspects with “just one more question” until they were finally forced into revealing themselves as the killer. Or it might date all the way back to endless childhood hours engrossed in the latest thrilling adventures of Enid Blyton’s Famous Five or Secret Seven. Nowadays I am a sucker for a good episode of Miss Marple, Poirot or, my guiltiest pleasure of all, Midsomer Murders. And I always have a ready supply of whodunnits on my Kindle as well as on my book shelf.
My preoccupation with murder mysteries may sound a little morbid but, in my defence, it is not the blood and guts that draw me to the genre. It is the intriguing plots and the challenge of piecing together a seemingly impenetrable puzzle. Of course, the pleasure in most crime dramas comes from looking for clues and motives, spotting red herrings and attempting to solve the mystery ourselves. The enjoyment in an episode of Columbo, on the other hand, comes from watching someone else put the pieces together, whilst we – the audience – already know who the killer was and how they did it.
The puzzle of vitiligo
I find the mystery of vitiligo every bit as challenging and absorbing as those fictional tales but I have not always felt this way. When I was still in the midst of my own drama – wondering why on earth my skin kept developing new white spots, dreading when and where the next one would appear and hoping and praying for a cure - or anything at all that would help even a little – I was too deeply affected by it all to want to spend too much time dwelling on it. It was easier to cover it up and try not to think too deeply about it. But once my re-pigmentation was in full swing it was as if I was watching another episode of Columbo, knowing how the story would end. The solution to the mystery was in plain sight and so I could relax and enjoy watching the rest of the story play out. Suddenly I didn’t mind focussing my attention on what was happening to me because it was no longer depressing. In fact, it was thrilling to see the colour returning to my skin and I became fascinated by the process. This was when I began to read everything I could find on the subject of #vitiligo in an attempt to understand as much as possible about what causes it, ways of treating it and ways of coping with it.
What I have learned (and am still very much in the process of learning) is that, unlike the fictional detectives who solve every crime, catch every villain and tie up every loose end, a vitiligo detective’s results are not as clear cut. It seems there are always differing medical opinions, conflicting theories, inconclusive research results and – most disturbing of all - deliberately misleading and bogus claims to sort through before you can come to any definite conclusions on the subject. But I suppose this just goes to show that vitiligo is not a work of fiction. It is real life and affects different people in different ways. It is an ongoing investigation that, in all probability, will eventually culminate in a complex set of solutions, reflecting the fact that it is a complex condition.
The most effective treatment
Obviously - since there is no official cure for vitiligo yet - this is a mystery that is still under investigation by researchers and sufferers alike. It is a detective story that looks set to run for quite some time. But everything I have learned, and experienced, so far convinces me that nutritional deficiencies play a central role, maybe the central role, in the development of vitiligo and that correcting those deficiencies is currently the most effective way to reverse it and keep it at bay. Saying this may not be quite the same thing as solving the mystery and closing the case but it has certainly made a world of difference to me - and to many others who have adopted the same, or a similar, approach to their treatment.
Just why a significant minority of the world's population seemingly randomly lose patches of their skin colour is evidently a complicated puzzle that is still in the process of being solved (though I am confident it will be eventually). Until it is, I shall continue to be a vitiligo detective and hunt down every fascinating clue I can find. I shall, like the good lieutenant, keep on asking “just one more question” and keep passing on any potentially useful answers I come across in this blog. However, much as I enjoy researching and writing it, I look forward to the day when the only mysteries I try to unravel are fictional ones because vitiligo will have become a straightforward condition to cure and this blog will have lost its relevance.
My name is Caroline.