Best practice in vitiligo

Last Updated on 15th September 2022 by Caroline Haye

Picture

How would you rate your doctor?

Back in the Dark Ages, before the internet, it was customary to rely on the family-doctor for all medical opinions, diagnoses and treatments. Our GP (primary care physician) was considered to be the infallible oracle for all questions biological and physiological and his or her word was not to be questioned. Now, of course, the first place most of us go to check our symptoms and look for help is our trusty search engine. Only then, armed with detailed information on our condition, do we seek a professional confirmation of our self-diagnosis and a prescription to make whatever ails us go away. The hearts of doctors around the word must surely sink like a gallstone in a glass of water every time a patient comes into their surgery clutching an assortment of printouts from Wikipedia, sundry health forums and symptom checker websites. Whilst I can sympathise with the medical profession’s undoubted irritation at this phenomenon, I firmly believe that many of us whose health problems are relatively uncommon and hard to treat are left with no choice but to seek help online. Not only that, but careful and intelligent online research often can, and does, result in us acquiring a far better grasp of our condition than the person on the other side of the consulting desk, wearing the white coat… Because best practice in vitiligo care is unfortunately not universal.

Some doctors really do know what they are talking about when it comes to vitiligo

Vitiligo is a classic case in point. As I have often said before, it seems to me that a shockingly high proportion of vitiligo patients do not receive the quality of support and care from their doctors that they deserve or that they would receive if they had, shall we say, a more “popular” skin condition. I regularly hear from people whose attempts to obtain information and solutions for their vitiligo from their doctor have been met with a dismissive and unhelpful attitude. A recent example of this is a 35 year old man whose email description of his experience pretty much summed this attitude up.  He told me, “My GP had no idea and after waiting 6 months to see a dermatologist I was in there 10 minutes and he told me nothing can be done for me and I was sent on my way”.

This state of affairs saddens and angers me. But it does at least make exceptions to the rule all the more welcome and worthy of note. I have previously referred to the fact that some medical practitioners are more enlightened than others when it comes to vitiligo and this week I would like to highlight a couple more of these exceptions.  I recently came across two interesting interviews in Dermatology Times that prove there are doctors out there who have a positive and proactive approach to vitiligo.

The Big Picture, Vitiligo Treatment Success

The first interview (back in 2009) was with Charles Crutchfield, M.D., adjunct clinical associate professor of dermatology at the University of Minnesota Medical School in Eagan, Minnesota, in an article entitled The Big Picture, Vitiligo Treatment Success.  Dr Crutchfield discusses the success of treatments including UVB, excimer laser, topical steroids and antioxidants (both topical and systemic).  Although this information is no longer hot off the press, what really caught my eye was the doctor’s comments about success rates. He says: “I think a lot of physicians assume nothing can be done.  “I’ve seen patient after patient come in and say they’ve been to many doctors who say there was nothing that could be done — and before the development of laser therapy and phototherapy, that may have been true, but we now really can offer some improvement.  We don’t have total success, but in my practice, I would say I see a positive response about 70 percent of the time”.
​​

Best practice in vitiligo should be adopted across the medical profession

The second interview I found (dated 2015) was with Seemal Desai, M.D., board-certified dermatologist, clinical assistant professor in the department of dermatology at University of Texas, Southwestern Medical Center in Dallas, and medical director of Innovative Dermatology.  (You can read the interview by clicking on the doctor’s name above.) In the section headed Insights in Vitiligo Dr Desai outlines the refreshingly systematic and thorough investigative processes he follows with his vitiligo patients in order to gather as much information on their medical background as possible, to be able to identify associated autoimmune conditions and nutritional deficiencies and to discuss all the treatment options available.  It has to be said that his approach is, sadly, a million miles removed from that of most dermatologists I get to hear about.  What a pity it hasn’t been adopted as accepted best practice across the medical profession.  If it had, I am sure there would be a lot fewer frustrated and dejected vitiligo sufferers out there.

Judging by the Dr Desai’s reply in the section entitled Dealing with Insurance Denials, it is clear that the dismissive attitude exhibited by much of the medical profession towards vitiligo is also shared by insurance companies in America who frequently refuse to cover treatments for the condition. (This is another complaint I hear all too often from vitiligo friends, frequently in relation to the provision of home phototherapy units).

As I read this interview it struck me that the doctor’s comments on the subject of available treatments sums up why vitiligo is the poor cousin of other skin conditions. He says, “Hopefully there will be newer things out there. The problem is that there are a lot fewer people with vitiligo than with conditions like psoriasis and atopic dermatitis, so when the National Institutes of Health and other agencies look for things to fund, vitiligo gets shifted to the bottom. We need more studies and data to prove that there’s systemic implications and involvement, so we can get people treated and increase research funding”.

In my opinion, it is well worth reading through this entire interview and taking note of the tests and treatment options Dr Desai runs through with his patients, as well as his comments about the psychosocial impact of vitiligo. And, dare I say, it could be worth printing it off to take with you to your own doctor if you want to avoid being sent away within 10 minutes with the words “there is nothing we can do” ringing in your ears.

Thanks for your comment - I look forward to reading and publishing it!