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.
My name is Caroline.