1. health and fitness
2. disease

Dispatches
THE MAGAZINE OF THE VITILIGO SOCIETY NUMBER 59 March 2012
VITILIGO
SOCIETY
Promoting a
positive approach
to living with
vitiligo
NATIONAL
VITILIGO
AWARENESS
DAY
25 June 2012
NEXT
OPEN DAY
ON 19 MAY 2012
SPONSORED BY
DERMACOLOR
In This Edition
Spring has arrived and,
as I write this, the sun
is shining on the
garden of the Vitiligo
Society HQ at 125
Kennington Road.
The March edition of
Dispatches is all but
finished and it will shortly be on its way
to the printers. But no rest for the
wicked. Next week, as a Trustee, I will
be attending a board meeting to discuss
our plans for the Society in the
forthcoming year and beyond.
can to generate interest in your area by
holding some kind of event. Let us
know if you need assistance with leaflets
or fact sheets.
National Vitiligo Awareness Day is
bound to feature high on the agenda.
When Michael Jackson died he left a
legacy of uncertainty about his medical
conditions, not least the reasons why his
skin colour became white. But over
time it has become quite clear that he
suffered from vitiligo. It has also been
reported recently that his son Prince may
be showing some signs of having the
disease.
OPEN DAY 19 MAY 2012
It seems only yesterday that I was at
Greencoat Place taking photographs of
our last Open Day. And now, we have
another Open Day coming up on 19
May which has been sponsored by
Dermacolor. If you missed the last one,
please consider coming along. I
promise you will enjoy the occasion.
Enclosed with this edition is a Vitiligo
Awareness poster. The idea is to have
these posters displayed in public places
such as doctors’ surgeries, libraries or
town halls but we have to depend on
you, our members, to achieve this in
your local area. Please also consider
buying a T-Shirt and wearing it on 25
June.
Michael`s sad death on 25 June 2009
gives us a platform to attract national
and international attention to vitiligo,
which, traditionally, has been underreported by the media and
misunderstood by the general public.
We will do our best to generate
information but we need your assistance
as members of the Society to multiply
our effectiveness. Please do what you
CONTENTS
Page 3
Open Day
19 May 2012
Pages 4 & 5
Open Day
12 November 2011
Page 6
Message From
Emma Rush
Page 7
Camouflage News
Page 8 & 9
Letters
Page 10
Research updates
Page 11
Pseudocatalase
Pages 12&13
Sarah-Jane Khalid
Page 14
UKDCTN Light
Trial
Page 15
Fundraising
Page 16
Awareness Day
The Vitiligo Society, 125 Kennington Road, London SE11 6SF Freephone 0800 018 2631 Office 020 7840 0844 Fax 020 7840 0866
www.vitiligosociety.org.uk email: [email protected]
Registered Charity No 1069607: Company No 3542195
Trustees of the Society
Tony Bewley, Norma Bird, Ingvald (Fred) Fredriksen, Paul Johnson, Bernard
Lamb, Jeff Lock, Mike Moore, Emma Rush and Chris Williams
Staff
Kalpana Pabari, Jennifer Viles
Editor for this issue
Jeff Lock
© The Vitiligo Society 2012
ISSN 1367-5877
2 Dispatches No 59 | March 2012
Items for publication in the next issue should be addressed to The Editor, Dispatches, The
Vitiligo Society, 125 Kennington Road, London, SE11 6SF,
(email : [email protected]) and should arrive by the end of May 2012.
Statements and opinions expressed in Dispatches, whether in editorial matter or in
advertisements, are not necessarily those of the Vitiligo Society. While the Society
may provide product information or allow companies to distribute samples, it does
not endorse or recommend particular products.
The Editor reserves the right to shorten and/or edit items submitted for publication.
SOCIETY EVENT
OPEN DAY
VITILIGO SOLUTIONS: CARE, COVER and CAMOUFLAGE
at 24 Greencoat Place, London SW1P 1RD On Saturday 19 May 2012
10.30 to 16.00
All Aspects of Skin Camouflage
Liz Allen, Trustee and Senior Tutor at the British association of Skin Camouflage . There will also
be opportunities to book a personal camouflage consultation.
Visiting Your GP - Expectations and Realisations
Chris Williams is a retired GP and a Trustee
of the Vitiligo Society who has first hand
experience of vitiligo.
“THOROUGHLY ENJOYABLE”
“COME ALONG, MEET OTHER PEOPLE
AND GET INFORMATION”
The Dermatology of Vitiligo
Jonathan Batchelor is a Consultant
Dermatologist at Nottingham University
THIS EVENT IS GENEROUSLY
Hospitals NHS Trust and has also worked at
SPONSORED BY DERMACOLOR
the University of Nottingham’s Centre of
Evidence-based Dermatology, He is
particularly interested in improving the
standards of design and reporting of clinical trials in diseases such as vitiligo and eczema.
Also - Vitiligo research update, medical tattoos, sun care, nutrition & vitamins and the dyeing of
hair affected by vitiligo.
REFRESHMENTS AND LUNCH PROVIDED
£10 for Members:£10 those accompanying them : £20 for Non Members. Please see separate
application form enclosed with this edition or go to www.vitiligosociety.org.uk to book.
3 Dispatches No 59 | March 2012
SOCIETY EVENT
LOOKING BACK AT OUR OPEN DAY ON 12 NOVEMBER 2011
A key
presentation
on the
Dermatology
of vitiligo
with many
questions
from the
floor.
Given by
Tony Bewley
Liz Allen
The psychology and practicalities of using
camouflage: a perennially popular topic with
all audiences.
Dispatches No 59 | March 2012 4
SOCIETY EVENT
LOOKING BACK AT OUR OPEN DAY ON 12 NOVEMBER 2011
Camouflage demonstration
The Vitiligo Open Day held at Greencoat Place on 12 November 2011 was a great success. It was attended by more than 70
people who judged the event to be either “excellent” or “very good”. The event was opened by Emma Rush, our new
Chairwoman of Trustees who set out the current status of the Vitiligo Society. The keynote address was given by Dr Tony
Bewley who presented a fascinating up-to-date appraisal of the dermatological aspects of vitiligo. Other plenary sessions
included Cosmetic Camouflage (by Liz Allen), NHS Dermatology Commissioning (by Sally Rickard) and the current status of
international research into the causes and treatment of vitiligo (Maxine Whitton & Viktoria Eleftheriadou ). There were
breakout sessions on psychological support through CBT Therapy (Sarah-Jane Khalid), Life Coaching (David Monk),
counselling (Helen Broughton) and a particularly well attended demonstration of cosmetic camouflage techniques given by Liz
Allen using Sarah-Jane Khalid as a model. (See photos above) The whole event ended with an question and answer session
where an expert panel fielded questions from the audience.
Some Comments We Received From Those Who Attended
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5 Dispatches No 59 | March 2012
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Informative
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and well
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Perfect as it was
Perfect as it was
SOCIETY BUSINESS
FROM OUR NEW CHAIRWOMAN OF TRUSTEES: EMMA RUSH
Dear all
First of all, a
belated hello.
I’ve been
Chairwoman
of the Vitiligo
Society for
three heady
months,
BAD STRATEGY DAY
As one of my first duties, on 21 January,
I went to the British Association of
Dermatologists’ Strategy Day at their
premises in Fitzroy Square. The
Vitiligo Society was one of only three
skin charities who sent someone along.
The day began with presentations on the
NHS reforms, which are designed to
place decisions on expenditure for
treatment on the shoulders of GPs, in
England. There is no doubt that there
will be an initial period, following
implementation of the reforms, when
spending will be very tight as GP
practices settle into managing their own
budgets for primary (care with them)
and secondary (care in a hospital setting)
for their patients.
In the afternoon we divided into groups
to decide how the conditions we
represented should be treated. Namely,
should people treat themselves, be
treated by a GP, or need to see a
consultant? I was adamant that people
with Vitiligo must be given access to
secondary care so that they can assess
what they want even if they decide that
this means no treatment. The
information from the meeting is being
collated and will be presented to the
government.
One important message coming out of
the day though was that frequently
people with Vitiligo are not presenting
themselves at their GP at all. This
meant that there was an erroneous
impression amongst GPs present, that
i) Vitiligo is not a “serious” skin
condition (mostly because, as we have
all probably been told by someone in
our lifetime, it doesn’t cause physical
suffering), ii) that we can manage with a
bit of make up that we can buy
ourselves, and iii) there are less of us
with the condition than the statistics
would suggest. Put simply, if a GP
doesn’t see you then they don’t believe
you exist!
We also talked about what is called
“psycho-dermatology”. This is an area
in which our trustee, Anthony Bewley,
has a specific interest. I really hope that
this will be a growth area, so that
patients may in future be offered not
only physical treatment options, but also
psychological support to help deal with
the day-to-day impact of the disease!
FINANCIAL PERSPECTIVES
The Society is committed to the ongoing support of everyone with vitiligo
and their family and friends. We will
also be part of the on-going discussions
in the NHS about treatment and
psychological support for Vitiligo
sufferers. But first and foremost we
must continue to ensure the financial
viability of the Society.
COFFEE AND CAKE INITIATIVE
Of course, the primary purpose of
National Vitiligo Awareness Day on
25 June 2012 is to increase public
knowledge of vitiligo but we see it also
as an opportunity to raise funds for the
Society. We have a target of £5,000.
And to raise that amount we need your
help, please! We would like to follow
some of the other, larger national
charities in getting members to raise
money through a “Coffee and Cake”
initiative. You could have your Coffee
and Cake party around, or on, 25 June,
and use it as an opportunity to raise
money by having a social event with
friends and family, and asking them at
that event to donate to the Society. We
can make available information leaflets
outlining what the disease is, and the
work that we do, if you’d like to have
something to give to people.
T-SHIRTS AND MORE
More information on National Vitiligo
Awareness Day appears on page 16 of
this edition including the opportunity to
purchase a “Vitiligo Awareness “ T-shirt.
PHOTOS PLEASE
We’d like some photos too please. So that
we can report back to other members
what you all got up to on 25 June!
PICNIC IN THE PARK
In addition if you’re in London on that
day, 25 June, some of the trustees are
going to meet up for a Picnic in the Park,
in Regent’s Park. We will meet at 12.30
hours at York Gate on the Outer Circle
(nearest Tube is Regent’s Park). This
will be an informal get together. Bring
your own picnic, and meet some of the
other members and trustees. Also a good
opportunity to wear your t-shirt!
OUR PLEDGE
We will continue to keep you posted on
the “reforms” and their impact on skin
treatment for us and we will continue to
support our members to the best of our
abilities. I sincerely hope that some of
you will be able to join us for our Picnic
in the Park and that you will also help us
raise at least £5,000 for the future of the
Society.
With best regards
Emma Rush
Chairwoman
Dispatches No 59 | March 2012 6
CAMOUFLAGE NEWS
SKIN CAMOUFLAGE SERVICE TRANSFERS TO CHANGING FACES
STATEMENT BY THE BRITISH RED CROSS
Throughout 2011 the British Red Cross looked at different options for the skin camouflage service. Whilst it was
clear the service was highly respected and offered a unique, life-changing service to beneficiaries, it was recognised
that it did not fit with the strategic direction and other priorities of the Red Cross. We wanted to ensure a future for
the service where it would receive the time and support it needs to flourish and grow. As a consequence, the Red
Cross has been working closely with Changing Faces, the leading not-for-profit organisation supporting and
campaigning on behalf of people with conditions that affect their appearance, to agree the transfer of the skin
camouflage service and both organisations are really delighted to have found such a good fit for this exceptional
work. Within Changing Faces, the service has an exciting future as a key aspect of the range of provision in a
charity where all the work is focused on the lives and experiences of people with conditions that affect their
appearance. It will receive the attention needed to develop to its full potential so offering the best possible service
to the beneficiaries and our NHS partners.
We are delighted that almost 100% of our current Red Cross service volunteers have now transferred their skills
and experience to Changing Faces ensuring people will continue to receive the same high quality skin camouflage
advice they need now and into the future. The formal transfer to Changing Faces took place on 14 November
2011 and clinics have been phasing over as we continue to work together to ensure a smooth handover both
nationally and locally. Changing Faces will have full management responsibility for all skin camouflage clinics
and volunteers across the UK from 29 February 2012. More information may be obtained from the Changing
Faces website for by phoning their dedicated phone number 0300 012 0276. The Red Cross wishes the skin
camouflage volunteers, the service and Changing Faces all the very best for the future.
Members can continue to get information on camouflage from the Vitiligo Society website and from the British
Association of Skin Camouflage either by visiting their web site or by ringing 01254 703107. Please let us know
the response you get from using the new service offered by Changing Faces.
COSMETIC TATTOOING : COMPLIMENTARY SESSIONS
Dawn Cragg was appointed as a Member of the Order of the British Empire (MBE) in the New Year 2010 Honours list, for
outstanding achievement in the development of medical tattooing as a service to healthcare.. She will be speaking at our Open
Day and is offering a complementary session to two members in the Nottingham area on the terms which she outlines below.
“I would like people with vitiligo (at least 2 years in remission) who may be interested in
Micropigmentation (Cosmetic Tattooing). They may be male or female. Areas that concern people the
most are:- face, (including the lips) neck, hands, scalp, and areola. I would be interested to be in touch
with those who fit into this group of people. N.B. Cosmetic tattooing is not recommended for very
large areas.”
Dawn can be contacted by e-mail or phone as follows.
Office:- 00441777 860500
Personal:- +447875498145
Website:-www.dawncragg.net
Enquiries:- [email protected]
Dispatches No 59 | March 2012 7
LETTERS
VITILIGO AND ME (ADVENTURES WITH PERFUME AND CAR WINDOW TINTING)
by Linda Chapman
PERFUME PROBLEMS
I wonder if my story is unusual? My
vitiligo started 29 years ago when I
was on holiday in Jersey. I bought
my first bottle of real perfume and as
most women do, I sprayed it on my
wrists. It didn’t take too long for a
white patch to appear on each wrist
and then spread symmetrically
across the back of my hands, knees
and feet and then it stopped.
A few years later, as I was passing
by a perfume counter, a salesperson
asked me if I would like to try a new
perfume and before I could say no
she grabbed my hand and sprayed
perfume on to my wrist. (Thankfully
they no longer do this.) Immediately
I went to wash but it was not long
before my vitiligo set off again. I
was scared at the speed the vitiligo
spread but then once again it stopped
and has remained stable.
For those who watch Friends, I now
wear my perfume like Phoebe. When
fully dressed, I spray perfume in
front of myself below neck height,
and then walk through it whilst
avoiding any bare skin.
A TALE OF TINTING
However, my aim in writing this
letter is to shed light on a subject
that others may be unaware of: the
use of car window tinting. I
searched the Internet to see
whether or not it was possible to
buy some window tinting for my
car but one that had a UVA/ UVB
filter.
I found a company that supplied
exactly what I needed with a tint
choice of light, medium, dark and
limo black. I got the light tint for
my front windscreen and front side
windows and the medium for the
rear side windows and back
windscreen and had a local person
fit it for me.
For 18 months now I have been
happily driving around completely
oblivious to the fact that the
window tinting I have is illegal!
Just recently I was informed by my
local mechanic that applying any
tint to the front windscreen is
absolutely not allowed and the
front side windows are too dark. If
I was involved in an accident then
the window tinting could
potentially void my car insurance
which would immediately be
cancelled and that the liability for
the accident would fall on me.
pass; 50%! I made a further phone
call to ask how to remove the
window tinting and was told to use
white spirit. Oh what a jolly weekend
I shall have!
I haven’t been put off by this
experience. In hindsight I should
have done some research, the answers
are out there if you’re willing to look
for them. I now need to find a legal
car window tint!
WHAT I DISCOVERED
In accordance with the Vehicle &
Operator Services Agency (VOSA)
statement, the light transmitted
through the windscreen must be at
least 75%. Also, the front side
windows to either side of the drivers’
head must allow at least 70% of light
to be transmitted through them. More
information regarding this subject can
be found on their website:
Linda Chapman
Post Script Sent By Linda
Luckily, I found a company only 30
miles away who would remove my
current window tint and replace it
with one that allows 70% light
(though only 50% UVA/UVB). I
contacted my car insurance to ask if
having a window tint would affect my
premium. I was told it wouldn't but I
should check with my manufacturer
as most of them now include a tint in
their windows. Yes, my car windows
already have a tint of 10% and add
to that another tint of 70% and once
again my car would be illegal.
Guess it's back to the factor 50 and a
sunhat!
On learning this I contacted the
company from which I had
originally bought the window
tinting from. Their rather
unhelpful response was that the
issue was my fault as I was the one
who had chosen to buy the
window tinting. After several
phone calls I finally got the answer Thanks Linda for a great letter. We
to my question regarding how
would be interested in other stories
much light the window tinting let
on both perfume and car-tinting.
8 Dispatches No 59 | March 2012
LETTERS
TACROLIMUS COMES UP TRUMPS FOR KARIM
“The condition has
remained stable with
no new patches. We
are about to commence
another session of
treatment with
tacrolimus.”
Karim Meyer Aged 11
Dear Jeff
The Society`s Open Day on 12 November was really an
informative day for us. It was helpful to hear about the
various treatment options available and to be in a position to
think again about further treatment options for Karim.
Karim had great success with Tacrolimus which he was
prescribed in 2006 (aged 5). He was using it on his face and
within a few weeks of starting the treatment we noticed
areas around his eyes started to re-pigment. After we
stopped using tacrolimus we went on a short holiday to
Cyprus and some months after our return we noticed
significant areas of re-pigmentation again on his knees, and
around his neck.
Karim is now a few weeks away from his 11th birthday and
the re-pigmentated areas have remained consistent and the
process continues. The condition has remained stable with
no new patches. We are about to commence another session
of treatment with tacrolimus.
Yours sincerely
Alison Meyer
Dispatches No 59 | March 2012 9
RESEARCH
RESEARCH UPDATES
Could Vitiligo Have A Silent
Inflammatory Stage?
A recent article in
Pigment Cell &
Melanoma
Research by
Professor Alan
Alain Taïeb
(pictured) has
suggested that local
triggers may alert
the skin immune
system and may
precede immune responses which cause
depigmentation to occur. He suggests
that this may be similar to other skin
inflammatory disorders like psoriasis.
The article comments that Koebner’s
phenomenon (the induction of an
isomorphic lesion following trauma) is
as common in vitiligo as in psoriasis.
Unfortunately unlike other prevalent
chronic skin conditions, which are
overtly inflammatory, such as dermatitis
or psoriasis, vitiligo has a near orphan
status for drug development. The artcle
concludes that from a therapeutic
standpoint, vitiligo is still regarded by
many physicians as a simple problem of
regenerative medicine, with the main
aim to repopulate the depigmented skin
with functional melanocytes from the
margins of the lesions or from intact
progenitors in hair follicles. However,
within the aforementioned context of a
chronic/relapsing inflammatory disorder
prone to unpredictable flares, this view
is probably incomplete if not
misleading. As also noted for alopecia
areata, a disorder which shares many
features with vitiligo, including a silent
inflammatory phase on a different skin
target (hair follicle), the challenge with
vitiligo is that the early or preclinical
phase is undetectable and the revelation
phase is sudden, with little scope for
prevention. Furthermore, in the case of
vitiligo, repairing or compensating
melanocyte loss proves even more
practically challenging than
rescheduling the hair cycle in alopecia
areata. Treatment with methotrexate has
10 Dispatches No 59 | March 2012
been used with success and a good
safety profile for many inflammatory
chronic non-skin and skin disorders,
including alopecia areata but,
surprisingly, pilot studies have not yet
been conducted in vitiligo. Pending the
availability of more targeted therapies,
the mounting evidence of vitiligo as a
chronic inflammatory skin disorder
emphasizes the importance of taking a
fresh look at methotrexate
SCENESSE: New Treatment
For Vitiligo Under Trial by
Clinuvel.
SCENESSE® (pronounced "sen-esse")
acts by increasing the levels of melanin
in the skin; and shields against UV
radiation (UVR) and sunlight.
SCENESSE® is delivered via a
subcutaneous dissolving implant
approximately the size of a grain of rice.
Increased pigmentation of the skin
Early Treatment On Face,
Children and Small Lesions appears after two days and lasts up to
two months. Clinuvel is currently
Has a Greater Chance of
testing SCENESSE® in a range of light
Success
and UV related skin disorders and as a
repigmentation therapy in nonsegmental
A report by Japanese researchers
vitiligo. We have just been advised that
presented at the International Pigment
Cell & Melanoma Conference concludes Cliniuvel hope shortly to commission a
that there are significantly better chances further trial in the UK. The active
of success with vitiligo treatments on the ingredient is afemelanotide (alpha
melanin stimulating hormone alpha
face, in children, small lesions and if
MSH for short). SCENESSE® acts by
treatments are started early. The report
increasing the levels of melanin in the
by A. Sasase, C Hihiro Honda sand K
skin; and shields against UV radiation
Hayashibe Of the Shibata Clinic of
(UVR) and sunlight. It is not a cure for
Dermatology, Osaka states that “We
vitiligo and the drug was developed for
examined about 7,000 patients of
vitiligo vulgaris every year in our clinic. other conditions but it may be of some
therapeutic value for some people.
We will present results of recent
therapies for about 450 patients of
vitiligo who visited our clinics in the last We will keep you updated.
6 years including methods, risks and
effect of narrow-band UVB
(DERMARAY - 400), excimer lamp
(VITRAC) therapies. Furthermore, the
effects of various ointments, vitamin
D3, tretinointoceferil, tacrolimus,
prostaglandin, and Vitix will be
reported. The number of valid patients
was 449. We found that 91.5% of
patients (441 of 449) who were treated
in our clinics could get repigmentation
and that 13.6% of patients (61 of 449)
had greater than 50% repigmentation.
The effectiveness depends not on age
Please be aware that these are
but site (e.g. Face) and date of onset.
research projects at a very early
The four conditions for better prognosis
stage, not treatments currently
for vitiligo vulgaris are Face, Child,
available.
Early Phase, and Smaller Lesions.”
NEWS STORY
CONCERNS ABOUT PSEUDOCATALASE
A recent German TV Programme
has expressed concerns over claims
made about the effectiveness of
vitiligo treatment using PC-KUS
This has led to suggestions that the
Vitiligo Society should not be
providing a link to the website of
Professor Karin Schallreuter.
Pseudocatalase was developed by
Schallreuter et al and, for many
years has been used in the
treatment of vitiligo in combination
with short term UVB exposure.
Karin Scallreiter`s website states
that repigmentation with
pseudocatalase cream PC-KUS can
be achieved in all skin colours and
is independent of the percentage of
depigmented skin and the duration
of the disease. First signs of
repigmentation can be observed
after 2-4 months. Significant faster
initiation of repigmentation may be
induced with the combination of
climatotherapy at the Dead Sea
together with pseudocatalase. The
Vitiligo Society website states only
that, “We are frequently asked
about Pseudocatalase treatment
used in conjunction with
narrowband UVB. The lack of
clinical trials for this treatment
means that it is not available on the
NHS and is therefore expensive.
You can download information
about this treatment via the Karin
Schallreuter website.”
The Society`s position is that since
we are aware of proven successes
associated with Pseudocatalase, we
should continue to provide
qualified information on the
treatment. One such success is
described on this page.
Open letter from Maxine Whitton Patient and Lead Author of the
Cochrane Systematic Review of Interventions for Vitiligo.
I have tried pseudocatalase (PC-KUS) and have had remarkable
results.
Professor Karin Schallreuter was invited to give a talk at one of the
Vitiligo Society’s events and afterwards she asked me to be a
research patient. I had tried PUVA in the past with some success but
when I got to my mid 40’s the disease suddenly began to spread
rapidly which was psychologically devastating. I resigned myself to
having to live with it somehow and drew comfort from the fact that my
involvement with the Vitiligo Society gave me the opportunity to help
others deal with it. By the time I met her, I had already read her
paper, a case study of 33 patients published in 1995*, and found the
theory behind it intriguing. I was willing to give it a try though I had no
expectations that it would work for me as my vitiligo was by then quite
extensive and actively spreading.
There were no signs of improvement for 3 months and I was about to
give up when Professor Schallreuter persuaded me to wait longer. (It
can take a long time for any treatment for vitiligo to start to work).
Steadily from that point my vitiligo got better. Some areas like my face
and neck responded faster but the hands not at all. I also went to the
Dead Sea on her advice even though I had already got a lot of my
pigment back using PC-KUS. The Dead Sea experience made the
repigmentation go faster and areas that had not responded began to
show signs of improvement which persisted for several weeks after I
got back to the UK.
The treatment regime is very demanding and for personal reasons I
stopped treatment in 2003 after just over 3 years. By then my face
had completely repigmented, even most of my lips, as well as my legs
and arms apart from tiny spots on elbow and ankle. For more than 6
years I did not need to use cosmetic camouflage, I felt more
comfortable wearing summer clothes, which made a big difference. It
has been 9 years since I stopped the treatment. In the last few years
some of the patches have started to come back and I had a short
course of NB-UVB which helped. But two major operations and the
arrival of my grandsons meant I could not continue. The deterioration
has not been rapid, very few new areas have appeared and I have far
less depigmentation now than when I started the treatment in 2000. I
know the course of vitiligo is unpredictable but I shall always be
grateful to her for helping to improve the quality of my life.
*Treatment of vitiligo with a topical application of pseudocatalase and calcium in combination with short-term UVB
exposure: a case study on 33 patients. Schallreuter KU,
Wood JM, Lemke KR, Levenig C.Dermatology.
1995;190(3):223-9.
Dispatches No 59 | March 2012 11
MEDICAL TRIAL
PHOTOTHERAPY TRIAL TO BE CONDUCTED BY UKDCTN
By Dr Viktoria Eleftheriadou
the idea of home light therapy for the
treatment of focal and/or early vitiligo.
You might remember that, following
the vitiligo priority setting partnership,
our research team was planning to run
a pilot trial on one of the identified top
10 priorities.
Four out of 10 identified uncertainties
were concerned with the effectiveness
of light therapy alone or in
combination with other treatments. At
the moment, phototherapy in the UK is
mainly available for widespread
vitiligo. Patients have to attend
hospital 2 or 3 times a week, which is
a very big time commitment bearing in
mind the treatment lasts for several
weeks.
Taking into account the recent
evidence supporting the theory that
combination treatments with some sort
of lights generally seem to be more
promising than other treatments for
vitiligo, we have decided to work on
Taking all these factors into account, I
am delighted to let you know that we
have finally made it. We have designed
and got approval for a study and we will
be recruiting very soon into a pilot trial.
This study will be the first pilot double
blinded randomised controlled trial on
home light therapy in the UK. The HILight (Home Intervention of Light
therapy) trial for vitiligo is a small pilot
trial comparing hand-held light therapy
(NB-UVB) devices with dummy
devices. These devices will be used by
the participants to treat their vitiligo at
home for a period of four months. The
main purpose of the trial is to find out
and test various logistics around a future
multi-centre randomised controlled trial
of these devices including whether the
participants will be happy to receive this
treatment at home with limited medical
supervision.
The hand held light therapy (NB-UVB)
unit is a portable and light weight device
that is slightly larger than a usual
hairbrush. The device is held above any
small area of the skin and is suitable for
small patches making phototherapy
available for participants with limited
disease, and for participants who find it
difficult to attend hospital-based
phototherapy units 2 to 3 times a week.
The vitiligo research group is also
testing an educational package for
patients with early vitiligo i.e. a few
small symmetrical patches. During the
educational session participants will
learn how to perform light therapy at
home, deal with redness resulting from
light exposure, increase and decrease the
dose accordingly and ask for help when
appropriate. The study will take place in
the East Midlands area. If you would
like to find out more please keep
checking our website
www.vitiligostudy.org.uk. Or if you
would like us to keep you updated about
this and other vitiligo news please email
us on [email protected]
This publication presents independent
research commissioned by the National
Institute for Health Research (NIHR) under
its Programme Grants for Applied Research
funding scheme (RP-PG-0407-10177).
During the educational session
participants will learn how to
perform light therapy at home, deal
with redness resulting from light
exposure, increase and decrease
the dose accordingly and ask for
help when appropriate.
Viktoria giving a presentation on vitiligo research
at our Open Day on 12 November 2011
Dispatches No 59 | March 2012 12
FUNDRAISING
SEVEN SUMMITS CHALLENGE
Please help Leanna and the Vitiligo Society by sponsoring her
attempt to climb Everest and Lohtse.
OFF HIS ROCKER
AND WALKING 100
MILES FOR
VITILIGO
www.justgiving.com/leannashuttleworth
This is to ask you to please
sponsor our Everest/Lhotse
world record challenge. My
name is Leanna Shuttleworth,
I’m 18 years old, and live in
Dubai. My mum has vitiligo
and is a member of The
Vitiligo Society, and I want to
support them in finding the
cause and a cure for Vitiligo.
My dad, Mark Shuttleworth,
and I have so far summited
the highest mountains on 6 of
the 7 continents, and have just
Everest left to complete the
Seven Summits challenge,
booked for this April and
May. We're also attempting to
summit Lhotse, the fourth
highest mountain in the
world, within 24 hours of
Everest, a feat that was
accomplished for the first
time last year, and has never
been done by a woman.
Accomplishing these summits
would make me the youngest
British female both to summit
Everest and to complete the
Seven Summits, the first
woman to summit two 8000m
peaks in under 24 hours, and
the youngest female to
summit Lhotse. It would also
make us one very few father daughter teams to ever have completed the
Seven Summits challenge.
Dave Williams is an experienced long
distance walker. However, as he says “
This year I have have gone completely
off my rocker and I have been
accepted for the Long Distance
Walkers' Association 100 mile
Challenge Walk which takes place
over 48 hours between 2nd and 4th
June 2012. The course runs from
Victoria Park, East London to
Windsor - not in a straight line of
course!! This is the first occasion for
a long time that I have asked anybody
to sponsor me for such an event and I
have chosen the Vitiligo Society as the
charity which I will support. So please
dig deep and donate now. Any
donations, big or small, will be
gratefully received.”
Please visit Dave`s site at
www. justgiving.com/dave-williams4
and make a donation
Please help sponsor us in this, it really does
mean a lot, and you're money will be well used
towards improving many people's quality of
life.
You can find out more
about Leanna’s progress at
www.leannashuttleworth.com.
Dispatches No 59 | March 2012 13
PARTICIPATIVE EVENT FOR MEMBERS
PLEASE HELP US TO RAISE NATIONAL AWARENESS OF VITILIGO
The date of 25 June 2012 has been set for the National Vitiligo Awareness Day because it is the third anniversary
of Michael Jackson`s death. This gives us the opportunity to maximise coverage in the press because of the great
media interest in Michael Jackson. For us the purpose of the day will be
Ÿ Increase public awareness of vitiligo
Ÿ To raise funds for the Vitiligo Society
.
Press Coverage
We are preparing a press pack and will send it to local and national newspapers
with a request that they print a feature on vitligo during week preceding 25th
June 2012. The pack will include case studies, photos, fact sheets and
information on how to support the Vitiligo Society. We my also place a small
number of advertisements.
Local Events
Please consider holding barbecues or coffee mornings at which you can share
information about vitiligo and possibly raise donations for the Society. Please
see inside this edition for ideas from our new Chair of Trustees. (See page 6)
Poster Placement: Please Arrange For
The Display of This Poster in Your
Local Area
Within this edition is enclosed an A4 black and white poster designed to raise vitiligo awareness and encourage
people to get in touch with the Vitiligo Society for further information. A good position might be your local
doctor`s surgery or your libary or town hall noticeboard or your local sports centre. Please ask if the poster can be
displayed. Failing this you could simply put it up for display in your own front window. Whatever happens please
make sure it is seen by people in your neighbourhood on 25 June 2012.
Please Purchase a T-Shirt and Wear It To
Show Your Support for Fellow Sufferers
The Vitiligo Society has produced a T-Shirt with the specific purpose of raising vitiligo
awareness among those who may not even be aware that it exists. By wearing your T-Shirt
in public for just one day or throughout the summer period you can do a great service to
vitiligo sufferers in general. The T-shirt is available from the Society, now either through
the web site or by using the enclosed order form. They cost £12.00 for a short-sleeved
version or £12.50 for a long-sleeved version.
Dispatches No 59 | March 2012 14