Vitiligo conference update
The Royal Society of Medicine, in association with the Vitiligo Society, held a one-day conference at its headquarters in London to bring doctors and patients together.
Vitiligo Society Meeting
Before the conference the Vitiligo Society had its members meeting and it was mentioned that the society has improved its website and online presence through the following social networking sites:
Vitiligo Society Facebook Page
(this was not mentioned but, if you’re interested, you can also become an overseas member at www.vitiligosociety.org.uk)
Success Stories from Patients
The clear winner in helping patients seems to be narrowband UVB treatment, which is a form of light therapy.
A patient named Paul showed how he has largely repigmented with the treatment. Another patient by the name of Darryl also told of how he had great success with narrowband UVB treatment, after he had had only marginal success with PUVA. It was also noted that narrowband UVB treatment is much safer than PUVA. In the UK, the national healthcare system, the NHS, pays for the treatment, though there is a limit of 300 sessions. The patients said, unfortunately, the effects tend to fade away in some cases, but one can be re-treated.
Another thing to note is that treatment requires several trips to the clinic. A dermatologist later on emphasised that narrowband UVB should be done for at least 6 months, no less. Both doctors and patients alike testified people don’t give the treatment long enough to work.
The vitiligo society has a page on light treatments, with a section on narrowband UVB, at http://www.vitiligosociety.org.uk/treatments/photo.html
Through a pre-recorded video message, a patient by the name of Rob said he had repigmented his face with TACROLIMUS.
A patient by the name of Rob showed images of his stunning success with the pseudocatalase. Only one group of doctors is offering this treatment. Travel to Bradford, UK and Germany is required and NHS does not pay for it. The treatment essentially reduces the level of hydrogen peroxide in the skin, Rob said. It is 95% effective in people whom are deemed good candidates after testing, but it is expensive. Rob said he has spent about £2,000 to £3,000 ($3,300 to $5,000) in the last few years, and the effects have started to fade away but he has been able to re-treat. The costs include notably traveling, a special supply of cream and a large UVB light machine, which looks like a vertical suntan bed.
The society has a page on the treatment at http://www.vitiligosociety.org.uk/treatments/Pseudocatalase.html
It should also be noted that a dermatologist later said that a new study suggests that what works in the pseudocatalase treatment is actually the use of the UVB light.
The Ideal Doctor Visit
Dr Stephen Kownacki (general practitioner) gave a very honest insight into why some doctors do not provide very good care when it comes to vitiligo: they often don’t know much about it. General practitioners, the ones you see before you see specialists, have to know about everything because people come to them with everything. They don’t have the luxury of specialising in just one field.
When some doctors are faced with a condition they don’t know much about, Kowancki explains, they become uncomfortable. Rather than researching the condition and getting back to patient with useful information and treatment strategies, they may do one of a few things:
- Blame the patient — Try to convince the patient that he or she is over-exaggerating the importance of a little white spot.
- Pretend not to hear — Since patients often come in with more than one problem, the doctor may decide to address just the one he knows about.
- Pass the buck — Decides, in his mind, he doesn’t want to be involved and refers you to another doctor, without really talking to you about the condition.
NONE OF THESE APPROACHES ARE RIGHT, Kowancki insists. In his opinion, this is what should happen when you visit your doctor:
The receptionist should welcome you. Kowancki points this out because you should not have to wait to see the doctor more than what is expected. (Kowancki also points out that when making the appointment, you should ask if one of the doctors in the clinic specialises in dermatology. If you are going to a clinic with several doctors, invariably each one will have a forte. Ask which one at least has a keen interest in dermatology and see that one.)
Have a courteous greeting from the doctor that should include a handshake. You may be feeling isolated and a handshake and a warm smile can go a long way. Especially since skin condition are not contagious, patients should expect a warm greeting.
The doctor should listen. This, Kowancki said, is the most important part. The doctor needs to listen to what the patient wants. Doctors, even specialists, think they know what patients want but they don’t. The example he gives is one of an elder patient with psoriasis who didn’t want serious treatment, just some ointment for her chest since she likes low-cut blouses and some cream for her knees so she she could bend down and get the paper.
When you leave the practice, you should feel good. You should feel like you are empowered to do something. The doctor should feel excited he knows what the condition is. “Yes! It’s vitiligo,” Kawancki said on the podium. The doctor should express there are things we can do. Sure, none of them are guaranteed to work, but we’re going to do our best!
Last, you should receive a full examination. The doctor should inspect all the spots you have, if it’s the first time you are seeing him.
Kowancki educates doctors on an ongoing basis as to how they should act.
Last, he points out the importance of education, both on the part of the doctor and the patient. He refers everyone to an open-access, diagnosis website for skin conditions. It is the page of the Primary Care Dermatology Society, which has tips on identifying conditions. The web site address is http://www.pcds.org.uk/
Proof Michael Jackson had vitiligo
Professor David Gawkrodger, consultant dermatologist and lead author of BAD Guidelines on Vitiligo, said he had a bone to pick. He said Michael Jackson definitely had vitiligo. He showed a photo of the Jackson 5 like this one (couldn’t find exactly the same one) that showed on his elbow a white spot in the shape of a boomerang, which is called the Koebner Phenomenon. He said this proves Michael Jackson had vitiligo.
Maxine Whitton, who was the chairperson of the Vitiligo Society for four years, spoke as a patient and an advocate for research.
Maxine – the patient
In terms of being a patient, she said she had success with tacrolimus but when her vitiligo started up again, she needed therapy to curb her depression. Her therapist helped her greatly through a very difficult period in her life through the use of Cognitive Behavioural Therapy.
Maxine Whitton – the advocate
In terms of research, she has led a scientific review of treatments. Though she is not a medical professional, the Cochrane Skin Group and the Skin Care Campaign connected her with researchers, and she published A systematic review of natural health product treatment for vitiligo in 2006. I have mentioned this paper before, so hopefully this will get you to look at it closer. Her team studied published papers on vitiligo treatments from all over the world. Some of the 57 papers even had to be translated — one from Farsi. Though she believes there is still no really good medical study in the field of vitiligo, she says there has been a boom of reports in the last 5-10 years.
Other panelists reported that genetic research will now make it easier for pharmaceutical companies to develop drugs specially targeted to preventing the death of the pigment cell.
An update of the systematic review is due out next year.
Maxine said none of the studies she reviewed dealt with nutrition. When asked about the importance of diet, other panelists said all that has been discussed in the scientific community is the efficacy (effectiveness) of antioxidants. I’m not surprised by this but it should not mean a significant change in your diet, because you should already be incorporating as much antioxidants in your diet as possible, as they have also been shown to help with preventing and treating cancer. Antioxidants are found, for example, in Vitamin C, so orange juice.