Last Updated on 30th June 2022 by Caroline Haye
White patches may start in our genes but they affect our very soul
Vitiligo is all about the skin – right? Surely that is the beginning and end of the subject. For generations, doctors reacted to their patients as if this were true. Until very recently, most viewed it as a purely cosmetic issue, a harmless and even trivial ailment. Many refused to offer any treatment at all because they believed it to be a waste of time and money. Why? Because there was no outright cure. And because the few therapies that were available (e.g. Protopic and PUVA) could, at best, produce only partial and temporary benefits.
In the past few years, more and more has been discovered about vitiligo. In light of that knowledge, it is now obvious why those established attitudes toward the condition were so inappropriate. It is because they were based on an assumption that the problem of pigment loss starts and ends in the skin. As anyone with first-hand experience of it knows, it neither starts in the skin, nor does it end there. Its root cause and its development over time are as complex as its implications are for those affected by it. And its implications are so far-reaching that they leave virtually no aspect of existence unaffected. To quote Dr Iltefat Hamzavi, “Vitiligo is a white patch that affects the soul”.
So, if the beginning and end of vitiligo are not in the skin, where are they?
If it doesn’t start in the skin, where does it start? It almost certainly starts with genetics. It occasionally starts with chemical toxicity. More often, it develops alongside chronic, systemic poor health. This may involve autoimmunity, digestive abnormalities, poor nutritional absorption, hormonal imbalances, and/or emotional and physical stress. With the exception of chemical contact, none of these pathways to vitiligo start in the skin. They all start inside the body. So, if vitiligo starts inside the body, it begs the question why do most medical treatments only treat the outside?
And if vitiligo doesn’t end with the skin, where does it end? Well, the answer to this question is different for each individual. If the end result of vitiligo was just white patches on the skin, doctors might be justified in dismissing the condition as purely cosmetic. But, whilst white patches are the visible result of de-pigmentation, they are just the start of a mental process. Such changes to the skin set in motion a sequence of psychological responses that can have serious, even devastating repercussions. Loss of self-confidence, clinical depression, social isolation and, in some cultures, stigmatisation and prejudice are all common “symptoms”. And they extend so far beyond the dermatological diagnosis that they can alter the whole course of a person’s life. They can even alter their personality. So, if vitiligo extends so far beyond the skin, why do most medical treatments not include psychological or social support?
Public awareness of vitiligo is out-performing medical awareness
Clearly, things need to change. And the good news is that they are changing. But, at the risk of incurring the wrath of thousands of GPs and dermatologists around the world, it seems to me that understanding and support for people with vitiligo is increasing at a far faster rate among the general population than it is within the medical establishment. Vitiligo sufferers themselves are largely responsible for this rise in general awareness. We have increasingly made our presence felt online and via social media. In reaching out to each other as a vitiligo community we have begun educating the world at large about vitiligo. About what it is, what it is not, what it looks like and how it affects our lives. “Vitiligo Power” – if you want to think of it that way – is gaining traction. And it is doing so in ways it never could have done prior to the age of the internet. No doubt this is one reason why vitiligo research is finally being taken seriously. And it accounts for why some pockets of the medical profession now recognise that vitiligo is neither harmless, nor trivial, nor untreatable.
Will our health services catch up with vitiligo awareness?
Our western health services have a long way to go if they are to catch up with the recent increase in public awareness and specialist vitiligo research. But I am hopeful of a gradual knock-on effect. One that will eventually result in a much better experience for vitiligo patients everywhere. The time needs to come – and soon – when individuals with vitiligo can visit any family doctor’s or dermatologist’s office, wherever they live, and be confident of receiving a sound diagnosis, a caring and informed response, and access to up-to-date information and available treatments. And these treatments should include therapies for the inner person (both physical and mental) not just for the surface of their skin.
A white patch is something that the eye can see. It may look as if it is all about the skin. But vitiligo starts deep inside and it ends… well, for some people, you could say it never ends because its ramifications are countless and ongoing. So I say: let’s keep educating the world (including our doctors, wherever necessary) and let’s keep supporting each other. Let’s be positive about current advances in awareness and research and keep using, and sharing, all of those therapies – both medical and complementary – that have already proven to be effective and safe. And, while we are doing all of these things, let’s also keep firmly in our minds the goal of completing our knowledge of how this condition starts and how it progresses. Because, once we have clearly seen the beginning and end of vitiligo, we can be confident of seeing the back of it.
