What we need is more vitiligo detectives

Last Updated on 7th June 2023 by Caroline Haye

Thankfully, there is a lot more vitiligo research going on today 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 hunt down some clues. What we need is more vitiligo detectives.

For reasons I simply don’t understand, most mainstream doctors continue to approach vitiligo in isolation… Without considering the possibility that you might have another, underlying condition that could be related.

 Some, more enlightened, doctors will routinely check for diabetes or thyroid disease. But, for the most part, that is as far as it goes.  They usually just tell patients that there is no cure for vitiligo… That the patient should avoid getting sunburned but, otherwise, not worry about it. 

If you are very lucky indeed your doctor might refer you for UV therapy.  This is a good thing, as far as it goes. Phototherapy 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 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 GP or dermatologist has run exhaustive tests to rule out all the other associated conditions.  I almost never hear of anyone whose doctor has even asked them 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 doesn’t treat people holistically. It treats symptoms… pretty much in isolation.

So, where does all this leave the patient?  One option is to accept what your over-stretched and well-intentioned doctor tells you. Resign yourself to having white patches (and possibly other related 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… Do some detective work of your own to track down, and treat, any underlying causes 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 do an amazing amount of research ourselves. As long as we are thorough and intelligent in our research, there is a lot we can learn. And there are a lot of safe and sensible therapies that we can try in order to regain pigment. 

My success in almost completely reversing my vitiligo was the result of being proactive. Addressing various nutritional deficiencies was the answer for me. But I’m still an avid reader of all things vitiligo-related. So, 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.