We need a better way to save our skins

Last Updated on 1st September 2021 by Caroline Haye

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 the same script… A script that comes from a book with a title like A Book of Incurable Diseases and How to Deal With Them (or rather, not deal with them). The relevant chapter is probably entitled 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! It frustrates me more than I can say. Surely we need a better way to save our skins than this.

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 training regarding vitiligo are so unreliable that going to see your doctor is like a lottery. The only thing you can be sure of is that your chances of winning a prize 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 vitiligo. A standard protocol for helping patients who come to them with this condition is well overdue. 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.

People should not be leaving the doctor’s office upset and discouraged

That people leave the doctor’s office upset and discouraged due to a lack of helpful information cannot be right. Not to mention 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 do not even get the offer of 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.) I’m sure that other, more well known health conditions would not meet with such a dismissive response. So why should vitiligo be different?

I have no medical training. 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 therapy on my own. And this is what restored my normal skin colour almost completely. 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 know all the available options and to have 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 involve autoimmune disease. But not necessarily 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 currently providing.

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. A disease process that may involve the digestive and endocrine systems at the very least. Possibly also the lymphatic and nervous systems. 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 researchers. And they, in most cases, do not routinely see patients at all. What the vitiligo patient really needs is a multi-disciplinary approach.

How could things improve?

The current situation may sound hopeless. It is certainly challenging. But I do believe that an overhaul of the way doctors handle vitiligo patients is possible. And it would certainly be helpful. For a start, routine testing for other commonly associated conditions would seem to be a good idea… As would referrals based on the results. Surely this would mean patients getting 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 some or the more effective treatments available involve nutritional therapy. So, in an ideal world, all vitiligo patients who go to their primary care doctor would then find their way through to a secondary care system. They would get the chance to see one relevant specialist after another, as appropriate, according to the results of their various tests. And one of these should, in my humble opinion, be a nutritional specialist. Such a specialist could then devise a programme for each patient that would address the particular type and source of their pigment loss.

There is a need for a multi-disciplinary approach to vitiligo

Realistically, I do not expect we shall see our mainstream health systems introduce anything like this any time soon. (Probably never!). But any improvement in the existing quality of patient care would definitely be welcome.  

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.