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Dispatches
THE MAGAZINE OF THE VITILIGO SOCIETY NUMBER 54 July 2010
VITILIGO
SOCIETY
Promoting a
positive approach
to living with
vitiligo
In This Edition
You might say that this
edition contains both
good news and bad
news.
One major item of
good news concerns
the progress of genetic
research into vitiligo. Not only have
more advances been made in identifying
the specific genes relevant to vitiligo but
researchers have also suggested that
vitiligo may give natural protection
against deadly skin cancer. They have
discovered a common gene mutation
shared by up to 70% of the population
that both increases the chances of
vitiligo and reduces the risk of
malignant melanoma, the most serious
form of skin cancer. The research points
the way towards treatments which may
have the effect of “calming down the
immune system.” Read more on pages 4
and 5.
meeting in recognition of the Society`s
25th Anniversary. Given good
weather, we hope to make use of the
garden at 125 Kennington Road for
this event.
The bad news concerns government
cutbacks, a subject with which all our
readers must all be very familiar. In
this instance, there is a major risk that
the cuts may impact upon the
availability of local dermatology
services. We have received a letter
from Andrew Langford of the Skin
Care Campaign which is reproduced
on page 15. If you know of any
reduction in your NHS dematology
services, or if you believe that such a
reduction may be imminent, you are
invited to contact Andrew Langford
directly
CONTENTS
Page 3 -
Society Business
Pages 4&5 -
Research
Pages 6&7
Natalie`s Story
Pages 8&9
Abi`s Story
Page 10
Studies and
Treatments
Page 11
Letters
Page 12
Closure of Bradford
Institute
Page 13
London Marathon
Page 14
UKDCTN Update
Page 15
Cuts in Government
Services
Page 16
News for Members
Jeff Lock
Editor
It seems to me that if 70% of us are
carrying vitiligo genes, it makes it even
more important to ask the question what other trigger mechanisms may
cause the start of vitiligo? If you have
any view or opinions on this I would be
really grateful if you would send them to
me for publication. (See page 16)
Another item of good news is the
invitation on page 3 to join us at Society
HQ on 26 August for a members’
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, Jeff Corne, Hilary Fassnidge, Elana Kelly, Bernard Lamb,
Jeff Lock, Debra Leeves, Mike Moore, Gurdeep Romanay, Emma Rush
and Chris Williams
Staff
Kalpana Pabari, Jennifer Viles
Editor for this issue
Jeff Lock
© The Vitiligo Society 2010
ISSN 1367-5877
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 September 2010.
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.
This edition is sponsored by a donation from VTCT
2 Dispatches No 54 | July 2010
SOCIETY BUSINESS
MEMBERS MEETING ON 3 JUNE
Left to Right : Front Row : Harshad Patel, Alex Quin, Victoria Deejua, Norma
Bird, Sarojini Ariyaniagam, Middle Row : Steve Hargadon, John Clark, Daphne
Horder, Nieves Ffrench, Elana Kelly, Jennifer Viles. Back Row : Fred Fredriksen,
Carmen Fenech, Anjana Parekh, Sangita Parekh.
On 3 June there was a gathering of members in the garden of the Vitiligo Society
HQ at 125 Kennington Road to discuss current issues related to vitiligo and to meet
Steve Hargadon who is based in Sacramento, California and runs a website called
“Vitiligo Friends”. Steve was in England on business and had asked the Society if
it was possible to meet some Society members. Uppermost among topics of
conversation was the recent research reported on pages 4 and 5 which suggests that
70% of people may have a particular vitiligo-associated gene and furthermore that
the gene may confer some protection against malignant melanoma. Steve`s web
site can be found at www.vitiligofriends.org.
JOIN US FOR A 25th ANNIVERSARY EVENT ON 26 AUGUST
As most of our readers know by now, this year is the 25th Anniversary of the creation of the Vitiligo
Society. On Thursday 26 August, starting at 17.00 hours, the Society is holding a special members’
event at 125 Kennington Road. Trustees of the Society and members of Medical Advisory and
Scientific Panel (MASAP) will be on hand to discuss members` issues and provide information on
the current state of vitiligo research. The event will also have a “social” side with refreshments
provided for all those who attend. Given good weather, we hope to make use of the garden at the
Society HQ.
Everyone is invited but, to ensure we can accommodate everyone, we need to know in
advance who is intending to be there. Please send us an email to
[email protected] or call us on 0800 018 2631. Please come along and
help us celebrate our 25th anniversary.
Dispatches No 54 | July 2010 3
RESEARCH
SIGNIFICANT NEW FINDINGS FROM GENE RESEARCH
A recently published research paper
“Variant of TYR and Autoimmunity
Susceptibility Loci in Generalized
Vitiligo” by among others Professor
Richard Spritz, Professor Dorothy
Bennett and Professor David
Gawkrodger may have identified that
vitiligo may give natural protection
against deadly skin cancer. Researchers
have discovered a common gene
mutation that both increases the chances
of vitiligo and reduces the risk of
malignant melanoma, the most serious
form of skin cancer.
Professor Dot Bennett, from St
George's, University of London, one of
the study authors, said: "Although this
may provide some consolation for
people with vitiligo, they should still be
careful in the sun. As they know, they
sunburn quickly, and a lower risk of
cancer doesn't mean zero."
Seventy per cent of the general
population have the gene variant that
increases the risk of vitiligo while
reducing the risk of melanoma. The
remaining 30% have a different variant
that raises melanoma risk while
lessening the chances of vitiligo.
Although everyone has one of the two
variants, neither guarantees that either
vitiligo or melanoma will actually
develop. Likewise, neither guarantees
protection.
The scientists linked to vitiligo several
genes that were already associated with
auto-immune conditions such as type-1
diabetes, rheumatoid arthritis and lupus.
Professor Bennett said: "As nine out of
10 of the genes newly found to be
associated with vitiligo are connected
with the immune system, it really begins
to be impossible not to believe that
immunity is important in this disorder.
This gives new support to an old idea
that our immune system may help us not
to get cancer, by killing potential cancer
cells before they get started.
"This also underlines the idea that
successful treatment is likely to include
an element of calming down the immune
response."
Malignant melanoma affects more than
8,900 people in the UK each year and is
the country's sixth most common
cancer.
Seventy per cent
of the general
population have
the gene variant
that increases the
risk of vitiligo
while reducing the
risk of melanoma.
The remaining
30% have a
different variant
that raises
melanoma risk
while lessening
the chances of
vitiligo.
The findings emerged from a genetic
study of 1,514 patients with vitiligo and
2,813 people without the disorder.
Researchers looked at almost 580,000
single-letter changes in the genetic code
called single nucleotide polymorphisms
(SNPs) to see if any were associated
with vitiligo. The findings, published in
the New England Journal of Medicine,
underline the growing belief that vitiligo
is an auto-immune disease.
Professor Dorothy Bennet
4 Dispatches No 54 | July 2010
RESEARCH
PEOPLE WITH VITILIGO MAY HAVE SKIN CANCER PROTECTION
(The Story as Reported on the BBC News Website on 21 April 2010)
People with the skin disease vitiligo may have natural protection against skin cancer, a study suggests. The condition, affecting
one in 200, causes pale skin patches that lack pigment and burn easily - leading to an assumed increased risk of skin cancer.
But the University of London study of 4,300 people identified a common gene mutation that both increases the chance of
vitiligo and cuts cancer risk. The findings are reported in the New England Journal of Medicine. However, study author
Professor Dot Bennett, from St George's, University of London, still warned: "Although this may provide some consolation for
people with vitiligo, they should still be careful in the sun. As they know, they sunburn quickly, and a lower risk of cancer
doesn't mean zero." The findings, reported in the New England Journal of Medicine, emerged from genetic testing of 1,514
patients with vitiligo and 2,813 without. Seven genes in total were identified that were linked to vitiligo.
Some 70% of the general population had the combination that increases the risk of vitiligo while reducing the risk of
malignant melanoma, the most serious form of skin cancer. The remaining 30% had a different version that raises melanoma
risk while lessening the chances of vitiligo. Although everyone has one of the two variants, neither guarantees that either
vitiligo or melanoma will actually develop. Likewise, neither guarantees protection, the study added. The genes identified were
already associated with auto-immune conditions such as type 1 diabetes, rheumatoid arthritis and lupus. This prompted
suggestions the research may even lead to improvements in treatment for vitiligo. There is currently no cure although the
condition can (sometimes) be managed through steroid creams and treatment with ultraviolet light. But the study said future
therapy may involve some element of "calming down immune response"
Dispatches No 54 | July 2010 5
PERSONAL ACCOUNT
PRESENTATIONS FROM THE RSM : NATALIE`S STORY
Doctors found it difficult to diagnose
me at first. They actually thought it
was nappy rash and told my mum to
just “keep an eye on me”. It was only
when it started to spread at a rapid
speed that the doctor later referred me
to Great Ormond Street Hospital. The
hospital helped me by including me in
trials which included trying out
different creams and taking tablets.
They also kept a close eye on how my
skin developed monitoring periods
when it got seemingly worse or a little
better.
Presentation given by Natalie
Ambersley at the Royal Society of
Medicine on 21 November 2009
Looking at me, you would think I
was an ordinary young, mixed race
woman. And even though I am,
there is something that makes me
different from everyone else. I have
Vitiligo, a skin condition that affects
1 in 100 people from all races. It is a
loss of pigmentation which results
in patches covering all, or some,
areas of the skin.
Although not contagious or life
threatening, the emotional effects
surrounding the condition can often
leave people emotionally
devastated.
I’ve had Vitiligo since the age of
two. I am now 27, and don’t know
any different. I don’t know what
it’s like to have clear, flawless skin.
I don’t know what it’s like to wear a
t-shirt without fake tan to cover the
patches, or wear a cute sleeveless
dress or a pair of shorts in the
summer.
My journey with Vitiligo started
when I developed a small white
patch on my hand. Within 3 months
that small patch had spread to my
arms, legs, body and face. I was a
mixed race baby of Jamaican and
British heritage, now covered in
white patches.
6 Dispatches No 54 | July 2010
My parents were adamant in making
sure I wasn't ashamed of my body and
refused to hide me away in trousers,
long jumpers, or skirts with tights.
Instead, like all the other children, my
mother let me run around in pretty
skirts and t-shirts showing off my skin
to the rest of the world, and
encouraging me not to feel as though I
had to hide away. After all I had
Vitiligo, not a life threatening disease.
At the time I thought nothing of it, I
thought I looked normal, but when I
look through old photo albums now I
Being part of
the Vitiligo
Society and
events such as
the Walk for
Skin have
helped me to
recognise and
accept who I am
without being
embarrassed by
what I look like.
Doctors found
it difficult to
diagnose me at
first. They
actually
thought it was
nappy rash and
told my mum to
just “keep an
eye on me”.
do think my skin must have looked
very prominent to others. But I
wouldn’t change what my mother did
as she gave me that extra little bit of
confidence that I used to lack.
By the time I had started school my
Vitiligo had settled. Fortunately I
didn’t get teased. I did get the odd
comment, as children do when
someone is a bit different, but I don’t
recall going home to my mum crying
my eyes because someone had said
something nasty. I guess I was
fortunate in that respect.
However, when I turned 16, left
school, discovered fashion and
became exposed to a ‘bigger world’,
having the confidence to be proud of
my skin soon disappeared. No longer
did I want people to see what my skin
looked like, I wanted to cover up as I
felt embarrassed by the way I looked.
I would wear thicker makeup, and be
obsessive about anyone being able to
see my skin even in front of my
family.
Eventually, as I went through college,
started work and socialised more, my
Vitiligo wasn’t such a big issue and I
learnt to accept it is a part of me.
PERSONAL ACCOUNT
PRESENTATIONS FROM THE RSM: NATALIE`S STORY continued
Thankfully, the Vitiligo on my face has
cleared up.
I much prefer people to ask me about
Vitiligo, rather than assume I`ve been
burnt which I find much more
upsetting. There are some days when I
feel more confident and will wear a
sleeveless dress or a T-shirt, other
times I would rather just cover up and
not deal with people staring at me.
Every day I am reminded that I have
Vitiligo. If I`m doing an everyday
thing such as standing on the train, I
sometimes get the odd glimpse as
people try to figure out why my face is
black and my hand is white. I fully
understand that people are going to
look and question what it is, however
the one thing I can`t stand is people
that stare. It can really knock a
person’s confidence.
My parents and my sister have been a
constant support. They’ve always been
there through difficult times, especially
the summer months when I find having
Vitiligo the most difficult. I’ll always
be thankful to them for their support.
These days I see more and more people
with Vitiligo. Some people I see have it
really bad, all over their faces and
hands, which automatically makes me
sympathise with them. It’s at those
times I am thankful my Vitiligo isn’t as
prominent as it could be. I complain
about having Vitiligo a lot and can’t
imagine what it must be like for a
person who has it a lot more severely
than I do. Being part of the Vitiligo
Society and events such as the Walk for
Skin have helped me to recognise and
accept who I am without being
embarrassed by what I look like.
Natalie at Last Year`s
Walk for Skin
My parents and my sister have
been a constant support. They’ve
always been there through difficult
times, especially the summer
months when I find having Vitiligo
the most difficult. I’ll always be
thankful to them for their support.
Dispatches No 54 | July 2010 7
PERSONAL ACCOUNT
PRESENTATIONS FROM THE RSM : ABI`S STORY
Presentation given by Abi Rose at the
Royal Society of Medicine on 21
November 2009
Hello my name is Abi. I am now 14 and
have had vitiligo since I was 5. I came
off the beach one day in the summer and
noticed that my feet were white. We did
not know what it was and went to the
doctors who said it was vitiligo. I saw
some consultants; the last one signed me
off saying that there was nothing he
could do for me at the time. My mum
looked it up on the Internet and found
the vitiligo society which we joined.
I found the next 5 years difficult as I
came to terms with being different. I am
told that I used to cry at night and say
that I wish I was dead as I did not want
to be different to everyone else. As the
vitiligo spread I found it harder to cope.
It was hard to explain if I got caught off
guard and I was bullied. My friends
knew what it was and would support me
if I was bullied.
My mum came into school twice to
explain what it was and although this
helped I still found it hard to accept that
I had vitiligo– I started forgetting my PE
Abi Rose
8 Dispatches No 54 | July 2010
kit as I did not want to wear shorts.
When my mum and the school realised
this, it was agreed that I was allowed to
wear trackies to hide my legs.
Although one teacher had a go at me
because I was wearing trackies, and
when told it was because I had vitiligo,
he said “what’s that?” Later he
apologised to me.
I also had trouble with people staring
and making comments during my
swimming lessons. Again my mum
spoke to the teacher and she explained
it to everyone. It is easier when people
know what it is. Looking back on what
I used to look like I remember feeling
confused and more self conscious in
places that I know; strangely not as self
conscious on holiday where I find it
very easy to outstare people if I find
them staring at me. They usually look
away embarrassed. I preferred winter to
summer as I can cover up the vitiligo
easily.
People were even scared of me – was it
contagious? One boy called me a
“vitelego bug” I replied “you idiot you
can’t even say it right!”. My friends
are very supportive and stick up for me
if I get any comments. When I was 11
years old, one younger girl asked what
the brown patches on my legs were –
my friend compared me to a Dalmatian
dog – explaining that all people were
different colours like animals and Abi
was like a Dalmatian.
It is upsetting when people talk about
you but not to you, it hurts your
feelings, you know you are different.
My primary school was very
supportive. We raised some funds for
the society and the children all watched
the Living with Vitiligo for kids DVD.
We sent the DVD to my secondary
school before I started so that my tutor,
P.E. teacher and Head of House could
see what it was – it saved me having to
explain it.
It was hard to cope with the spreading
of the vitiligo – initially I had none on
my arms but then I fell over and
grazed my elbows which started it and
now my hands are white with a few
patches of pigment. The biggest part
of dealing with vitiligo was the
feeling of being the only one. I only
knew of one other person and that was
a mum at school who kept covered up
so it was only seen on her hands.
My parents came back from their first
meeting of the Vitiligo Society’s
parent group with a calendar from an
American society that had photos of
12 children with vitiligo – it was the
first time that I had seen other
children with it and I felt better as I
realised that I was not alone and that
there are other people who would
understand me. Later I met Becca
Moore and that helped me, as did
meeting a lady who told me that she
just gets on with life.
It is upsetting
when people talk
about you but
not to you, it
hurts your
feelings, you
know you are
different.
When I was 10, I decided that I did
not want to wear trackies for PE any
more. I wanted to wear the same
clothes as everyone else. That
evening I went shopping with my
mum for PE shorts and ankle socks. I
hung out of the car window and
shouted “I have vitiligo and I’m proud
of it!”. I felt good. I now have vitiligo
over more than 50% of my body. It
makes life so much easier when
people know you have vitiligo. It
PERSONAL ACCOUNT
PRESENTATIONS FROM THE RSM : ABI`S STORY continued
face. I also don’t see the point of
camouflage. For me, it is not much
better than having vitiligo.
I do sometimes think about bleaching
my skin and I think the worst thing that
could happen would be for me to take
some medicine and repigment but then
to lose it again. So I have decided to
leave it. My only plan for my vitiligo for
the future is if my hair turns white – I
will dye it.
makes me not care so much about what
people think.
To protect against the sun, I use a factor
50 sun cream, I also have some sunproof clothes from the modelling that I
did for the Vitiligo Society magazine but
some people have told me that they like
my pale skin. When we go round ruins
on holiday I am the one in the long
sleeved tops and leggings! I do find it
annoying trying to find clothes the right
colour that match all my skin tones.
Through the Society I have been in
touch with a girl who is a year older
than me and I have realised, writing to
her, how much easier I have found it to
cope than she has. I had it from an
earlier age so I don’t know any different.
My friends and family have grown up
knowing I have it. So they don’t ask
questions though I do get the usual,
“which shade is your natural/ original
skin colour” and “Wow you could be
really tanned”. The girl I have been
writing to had not told anyone about her
vitiligo when we first wrote to each
other but I told her she should as it made
it easier for me and she has now told a
few of her friends about her vitiligo and
said it makes it easier for her to talk to
someone.
My involvement with the Vitiligo
Society has helped me in my acceptance
of my vitiligo – I am in the Children’s
DVD on living with vitiligo. I have
helped with the magazine and been on
the front cover recently for my fund
raising – however the best bit was
interviewing Claire Cooper, an actor in
my favourite TV programme.
I have tried creams to cure my vitiligo
but they did not work for me. I don’t
use camouflage. I tried it but my skin
turned orange without a barrier cream.
So, I decided not to use it. I did not
want to cover up the real me. Don’t get
me wrong but I don’t really need to as it
doesn’t really stand out, and secondly I
use make up to cover up the bits on my
Vitiligo is hard when you are younger
because younger people may not
understand it. It’s hard when you get
older – as if you don’t have enough
worries on your plate! Am I fat? Am I
too thin? Am I ugly? Am I pretty? I
think I am best not knowing what it’s
like not to have vitiligo so I can’t
compare.
On reflection having vitiligo has not
stopped me doing anything I have
wanted to do; e.g. swimming, karate,
scouts, drama or playing sports for my
school.
I have decided that it’s best not to
worry about the future as you don’t
know what will occur. Will your
pigment come back? Will nothing
happen? Will you lose all your
pigment? If I lose all my pigment there
is no turning back.
I am told that I
used to cry at
night and say
that I wish I was
dead as I did not
want to be
different to
everyone else.
Am I intimidating? People will always
stare no matter what. Sometime, on bad
days I have doubts but normally I have
good days and look on the bright side.
At least I am different and special.
What people think about me is very
important to me especially if its people I
know or know me. More people need to
be aware of it.
Dispatches No 54 | July 2010 9
MEMBERS EVENT
STUDIES AND TREATMENTS : FROM THE RSM
Comments by Professor David
Gawkrodger During the Q & A
Panel at the Royal Society of
Medicine on 21 November 2009
basic research of how the disease is
caused. At the other end, how the
treatments we know work. So that’s
another way of approaching it.
I certainly agree all studies must have a
quality of life component to them
because it’s how the patient feels about
how the treatment has affected them,
not just in measuring the degree of
repigmentation that might have been
induced,
But there is a big problem about getting
sufficient funding. There is a lot of
pressure on funding, with a preference
for people to fund cancer research. I have
personally found that some of our recent
applications for funding to continue our
work on auto immunity have been
unsuccessful, but I did get £10,000,
Just to go back to the type of vitiligo. I
think it’s important that future studies
do actually define the type of vitiligo.
At the moment often they do look at
whether its segmental or non-segmental
vitiligo and that something nobody has
actually mentioned. We’ve
concentrated on vitiligo that is
symmetrical in type but there is another
type that may occur more commonly in
children which is segmental and affects
one side of the body, often the face or
part of the trunk and may have a
different cause. In patients who have
the symmetrical type of vitiligo it’s
important to see whether they’ve got
any evidence of other auto immune
diseases or family histories, in other
words thyroid disease, pernicious
anaemia or diabetes. That would be
important.
Another couple of points that have
come out of the discussion are in
looking at treatments. There are some
treatments that we know can work, and
they are phototherapy and topical
steroids, although I think it is better to
concentrate on the calcineurin
inhibitors and maybe actually
concentrate a little bit more on how
they work. For example, we just
surmise that ultra violet light stimulates
the pigment cell, or that the calcineurin
inhibitor reduces the inflammation in
the skin in some way. If we understood
a little better about how these things
worked, we might actually be able to
think of better ways of influencing the
mechanism. At one end, looking at the
10 Dispatches No 54 | July 2010
partly funded by the Vitiligo Society and
the British Skin Foundation to look into
an Excimer laser which is a focused light
source which treats vitiligo in certain
areas like the face, which I’ll be doing
next year, but it is very difficult to get
funding.
Two things – the quality of life is so
important. So many doctor-organised
studies show, for example, that a
psoriasis treatment has made a 75%
improvement and you’ve gone from a
thick red scaly patch to a thin red scaly
patch, and you’ve still got the patch and
at the end of the day to the patient that’s
not success, although on paper it looks
fantastic.
The second thing is, if you go to your GP
expecting them to give out tacrolimus or
pimecrolimus you may be disappointed.
These are creams originally developed
for eczema. In fact, their licence is only
currently for eczema and its even
more restrictive than that; it’s meant
to be from the age of 2 upwards. It
costs more than a topical steroid. It
was originally developed from a
product given orally to stop organ
rejection. There are some concerns
about developing cancer later on.
This appears to be unrealistic but
because it costs £20 for a 30 gram
tube instead of £1.70 for a tube of
Betnovate most GPs don’t prescribe
them very much for eczema for that
reason. So if you’re wanting it for
something else they’ll be even less
familiar with its use. That doesn’t
mean to say you shouldn’t educate
them, please do, and we’re trying all
the time to do so.
If we
understood a
little better
about how
these things
worked, we
might actually
be able to think
of better ways
of influencing
the mechanism.
LETTERS
LETTERS
Dear Editor
Dear Editor
COURSEWORK CAMPAIGN
PARIS OR BUST
My name is Jackie Truong and I am a
Year 11 student at Fairfield High
School. For my citizenship coursework I
have chosen vitiligo as my topic. My
main inspiration for this is that I have
the skin condition myself. Fortunately it
is very minor and I don`t feel affected in
any way. However, I believe that
educating people about vitiligo is
extremely important because, according
to my questionnaires, not many people
understand what it is.
My aim is to raise awareness by creating
posters to put around the school, making
leaflets which provide general
information about vitiligo and raising
some money for it as my dedicated
charity. I am in a group of three and we
have raised money by asking asking
students and teachers to pay 30p to take
part in our “Sweets in a Jar”
competition. I am pleased to say that,
altogether, we raised £39.82 of which
£13.27 will be dedicated to vitiligo.
The Vitiligo Society has given me a
significant amount of information,
advice and inspiration in order to
complete my coursework. The
incredible work which the Society
provides in helping people with vitiligo
and educating others has become a true
inspiration for me.
In the long term, I hope that the
knowledge about vitiligo is passed on to
others in order to create a better
community. People with vitiligo should
never feel upset, intimidated or
embarrassed about the condition which
made them “different” from others. I
will continue to try to raise more money
for your charity in the near future.
Jacky Truong
With an age range of 20 to mid-fifties
and most having a rugby background,
none of them, bar one, had any
experience of multi-sport endurance
events. It was raining heavily and a gale
was blowing. It was, therefore, with a
considerable amount of trepidation that
the group of 15 stood on the start line.
There was no doubt who the group were
supporting given that they were dressed
in bright, radiant pink and white spotted
jerseys, with the Vitiligo Society logo
prominently across the front. The
jerseys caught the attention of all of the
other participants and became the source
of constant banter throughout the day.
Just us, our bikes, map and phrase
book. My friend Nick and I left Ascot
on the first weekend in June cycling up
to 90 miles a day. As we considered it
was quite a feat for a couple of middleaged chaps, we thought we'd try and
raise some money for a number of
organisations by way of sponsorship.
One of my chosen charities was The
Vitiligo Society and I succeeded in
raising £700. It is the only UK charity
that provides support for people with
vitiligo and funds research into the
condition that impacts upon many lives
including some of my own family. It
was great that so many people found
themselves able to spare a few bob.
Richard Perrins
Dear Editor
OFF ROAD TRIATHALON
On Saturday 11th July 2009 a group of
friends from Haywards Heath raised
£1600 for the society by completing
off-road triathlons of 3 various
distances, ranging from 20 – 50 miles
at Beachy Head in Sussex.
The distances, terrain and weather made
for a really challenging and tiring day.
It was a fantastic effort from all, not
least from the local community, who
sponsored those competing. Special
mention must go to Gary Marshall, the
local chemist, who raised over £1,000
from his customers.
Liz Jordan
Message from the Society
Manager
A special thank you
to all those who
support the vitiligo
society by raising
money through
sponsored events,
especially the
triathaletes, bike
riders and students
featured in these
letters.
Dispatches No 54 | July 2010 11
TREATMENT
PSEUDOCATALASE TREATMENT NO LONGER AVAILABLE IN UK
Professor Karin Schallreuter, famous for
her association with Pseudocatalase,
has issued this statement.
Unfortunately, the Institute for
Pigmentary Disorders in association
with the University of Bradford/UK is
closing its doors with effect from June
1st 2010. From that date we are unable
to provide our patients with clinical
follow-ups and all requests related to
treatment must go to the German
Institute in Greifswald
([email protected]). Please note
that the shipping of cream orders will be
exclusively provided by KUS
Dermatology GmbH
([email protected]).
Looking back, it has been a pleasure to
serve you with your clinical needs here
at Bradford. My team and I have always
tried to fulfil your individual
requirements in a highly dedicated and
professional manner. We are proud
of what we have achieved. We have
certainly helped many patients in the
UK and overseas over the years. I
would like to take the opportunity to
thank you all for your belief in us.
Remember, we will be there in
Greifswald if you need us. If you have
any further questions please do not
hesitate to contact us at any time.
Very best personal wishes to all of you.
Pseudocatalase cream plus calcium
was developed originally by Karin
Schallreuter and her team and was used
as a substitution for low catalase levels
in the treatment of vitiligo. Treatment
of vitiligo was effected with a topical
application of pseudocatalase and
calcium in combination with short-term
UVB exposure,
The Institute`s website reports that
Pseudocatalase PC-KUS has been
successfully used in over 1000 patients.
Repigmentation 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
12 Dispatches No 54 | July 2010
repigmentation can be observed after
2-4 months. The Institute`s website
also continues that the treatment has no
side effects providing the liver function
of the affected individual is normal. A
faster initiation of repigmentation can
be induced with the combination of
climatotherapy at the Dead Sea together
with pseudocatalase PC-KUS over a
period of 21 days. First repigmentation
occurs between days 14-20. This fast
repigmentation lasts for an additional
3-4 months combined with daily
treatment using low-dose narrowband
UVB-activated pseudocatalase PCKUS. This repigmentation is stable!
(Schallreuter et al. Int J Dermatol
(2002) 41:482-487)
Professor Karin Schallreuter
.
“PROUD OF WHAT WE HAVE
ACHIEVED” : CLOSURE OF
BRADFORD INSTITUTE FOR
PIGMENTARY DISORDERS
Comment by The Vitiligo Society
Pseudocatalase is a treatment which is not available on the NHS. There are high
levels of hydrogen peroxide (H2O2) in the skin of people with vitiligo. Normally
the body can neutralise the harmful bleaching effects this has on pigment cells
(melanocytes) but unfortunately most people with vitiligo do not have high
enough levels of catalase in their skin which causes a build up of hydrogen
peroxide leading to the death or damage of the pigment cells. PC-KUS is a cream
which mimics the action of catalase thus allowing the melanocytes to grow and
multiply. The treatment involves the twice daily application of the cream all over
the body and exposure to narrow band ultra violet B light, depending on the
individual disease activity. Treatment is usually tailored to the patient’s response
after a special blood test that is only carried out in Greifswald. A basic blood test
is also required to establish that the patient is otherwise
healthy. On the basis of these results the patient may be given supplementation
of B12, folic acid and zinc. Patients now have to be registered in Germany.
Many patients purchase a narrowband UVB cabinet for use at home. The cost
of the UVB cabinet (or panel) may be as much as £800 and the cream and
consultation fees are on top of that. This is an expensive option but it has
proved successful in many of the patients selected for this treatment..
FUNDRAISING
ALL THE FUN OF THE MARATHON by Jeff Lock
A big thank you to all our members
who supported our runner in the
London Marathon. Bob Harding
completed the run in a time of 3 hours
56 minutes and raised a total of
£2,400 for the Society. Chris
Williams, a Trustee of the Society,
also ran.
About a dozen representatives of the
Society turned out in force at Canary
Wharf on Sunday 25 April to cheer
our guys through the 18-mile mark.
We had a “Vitiligo Society” banner
and lots of balloons in the Society
colours. It had been wet in the
morning but by the time they came
through it had turned bright and sunny
and it was clear that a lot of the
runners were suffering with the heat.
Marathon day in central London is a
bit of a festival and there were flags,
balloons and banners everywhere.
There was also a lot of noise with a
drum band only a hundred yards away
thumping out a pulsing Caribbean
rhythm.
Every year the London Marathon raises
millions of pounds for charities and this
year the Vitiligo Society is sharing in
that outpouring of generosity.
Dispatches No 54 | July 2010 13
RESEARCH
UKDCTN : TOP TEN UNCERTAINTIES FOR THE TREATMENT OF
VITILIGO ARE NOW DEFINED
By Dr Viktoria Eleftheriadou and Mrs
Maxine Whitton
As you may remember from previous
issues of Dispatches, the vitiligo project
is part of an independent research
programme commissioned by the
National Institute for Health Research
(NIHR) looking at setting priorities and
reducing uncertainties for the prevention
and treatment of skin disease
(SPRUSD). This project is being
coordinated at the centre of Evidence
Based Dermatology, University of
Nottingham.
We are really pleased that vitiligo has
been included in this research
programme and are working to ensure
that future research focuses on questions
that are important to patients and
clinicians. In order to do so, we have
been working closely with colleagues
from the James Lind Alliance (JLA).
The James Lind Alliance aims to
identify the most important gaps in
knowledge about the effects of
treatments and has been established to
bring patients and clinicians together in
a priority-setting partnership.
Initially, a survey was conducted to
collect uncertainties about the treatment
of vitiligo from patients and healthcare
professionals. This survey identified 93
unique treatment uncertainties following
a thorough refining process. Next, a
ranking exercise was conducted, which
allowed people to vote for their
favourite topics. This process identified
the top 23 treatment uncertainties
important to both patients and healthcare
professionals. Finally, the Final
Prioritisation Workshop resulted in a list
of top 10 research priorities for the
treatment of vitiligo. This workshop was
a full day event at the British
Associations of Dermatologists House in
London, on the 25th of March 2010.
half of them were patients and half were
healthcare professionals, including
dermatologists, specialist nurses, general
practitioners, researchers and
camouflage professionals . The
summary of the evaluation forms
showed that 100% of the people who
completed the forms were either “very
satisfied” or “satisfied” with the top 10
treatment uncertainties.
Also, we have received many positive
comments such as “Excellent, well
organised”, “Format allowed for varied
expertise and sharing of views and
opinions”, “Excellent exchange of
views”, “People were listened to”, “A
very successful day”. In addition, the
James Lind Alliance announced that the
vitiligo working partnership was the
most successful partnership they have
coordinated so far and the evidence from
the process garnered along the way is
invaluable.
With regard to the dissemination of the
top 10 treatment uncertainties, our
research group is currently working on a
series of articles and presentations for
professional organisations. This is
important if the purpose of the project is
to be realised, i.e. stimulating good
quality trials of treatments for vitiligo.
Unfortunately, for that reason we would
not be able to reveal the “Top 10” at this
stage because of restrictions applied to
We have had an excellent turnout and 40 all research results which prohibits wide
dissemination prior to publication in a
people attended the workshop. Almost
professional journal.
14 Dispatches No 54 | July 2010
However, we would like to reassure you
that the top 10 treatment uncertainties
for vitiligo will be published in a future
issue of Dispatches as well as being
made available on our website.
Finally, we would like to say a big thank
you to all the people who contributed to
this process. We have received great
support from the Vitiligo Society
through the entire project and the
contribution of patients has been crucial
to its success.
We really appreciate your time and
willingness to be part of this unique and
important opportunity to have your say
in research into vitiligo.
The views expressed in this article are those of
the author and not necessarily those of the
NHS, NIHR or the Department of Health.
CONTACT INFORMATION
Please don’t hesitate to contact us if you
have any enquires or suggestions on the
study, by sending an email to either,
[email protected]
or
[email protected]
GOVERNMENT CUTBACKS
WILL GOVERNMENT CUTS AFFECT DERMATOLOGY SERVICES?
A letter from Andrew Langford,
Chief Executive of the Skin Care
Campaign
Whilst we all knew that huge savings
are needed within the NHS during this
economic crisis it would seem that the
new government may be even more
radical than had previously been
anticipated. Whilst it may not be very
pleasant to hear, at least the new Health
Secretary, Andrew Lansley, has been as
up-front as possible and said that the
NHS will not be spared the efficiency
savings which the Government is due to
impose on the public sector.
As part of the coalition settlement, the
Liberal Democrats agreed to a
Conservative commitment to aboveinflation increases in NHS funding,
despite warning during the election that
this would lead to bigger cuts elsewhere
in Whitehall. But even as the NHS
budget rises, the service will have to
find savings, money that will then be
“re-invested”.
As always actions speak louder than
words and we must wait to see what
impact these extreme savings will have.
I suspect areas like dermatology will be
He is reported as saying “Overall
hardest hit, not least because it doesn’t
spending on the NHS will rise in real
attract the emotional public support like
terms, but the substantial increase in
areas such as cancer, children's services,
health spending over the past decade
intensive care units etc. Already
under the Labour Party was not
commissioners in many primary care
sustainable for the future”.
and hospital trusts are talking about
“low” and “no priority” frameworks and
“The Government would have to go
whilst, so far, I haven’t heard anyone
beyond the annual efficiency savings for speak explicitly about vitiligo I have
the NHS set out by Labour”, Mr Lansley heard some radical ideas for cutting
said. Labour`s plans had implied
back on services for people with acne. I
savings of up to £20 billion by 2013-14
expect equally uninformed subjective
but the coalition’s plans to do more
ideas will be put forward for vitiligo and
would mean “real pain for the NHS”.
acne where many see them as cosmetic
rather than clinical conditions that can
Currently the new Government is on
severely affect people’s quality of life.
course to spend £163 billion more than
it raises in tax this year, and painful
Inevitably hard times are coming and
plans to cut spending and close that gap coming fast for many with skin diseases
dominated the first meeting of the
who need good quality NHS care – we
Cabinet.
must act fast to save threatened services.
If anyone gets the slightest hint of plans
As their first act in office, ministers in
to change their service, please let me
every department have instructed their
know as soon as possible so that I can
officials to start drawing up plans to trim get involved, demand public
spending. Independent economists have consultation and provide relevant
suggested some ministries could face
information to inform the decision
cuts of up to 16 per cent over three
makers effectively.
years. Ministers are braced for those
cuts to be unpopular.
Yours sincerely
Before the election, the Conservatives
promised to find £12 billion in
efficiency savings throughout
government this year. Almost half of
that is expected to come from the NHS.
If anyone has information on local cuts
in dermatology services, or if you would
like to get involved locally in
safeguarding dermatology services,
please contact Andrew Langford at the
following email address.
[email protected]
or telephone: 07810 564913
If anyone gets
the slightest
hint of plans to
change their
service, please
let me know as
soon as
possible
Andrew Langford
Chief Executive
Skin Care Campaign
Andrew Langford
Dispatches No 54 | July 2010 15
NEWS AND EVENTS
PARTICIPATIVE EVENTS FOR VITILIGO SOCIETY MEMBERS
PLEASE WRITE TO US
Are there any identifiable factors which, you
think, contributed to the onset of your vitiligo ?
Recent research suggests that 70% of the population
may be carrying a genetic inclination towards vitiligo
and yet less than 1% of us actually develop the disease.
Do you have any opinion as to what factors triggered
the development of vitiligo in your case?
If so, please write to us, so that we may share your
views with other readers in the next edition of
Dispatches.
By letter to 125 Kennington Road, SE11 6SF
Or email to [email protected]
REMINDER:
PLEASE SEND US YOUR EMAIL ADDRESS
Were You Unable to
Attend The RSM on
21 November 2009?
Now You Can Watch
the Event on the
Society’s Website
Those who were unable
to attend the Society`s
Medicine and Me event
at the Royal Society of
Medicine can now
watch video excerpts
by simply logging on to
the Society’s website.
DATES FOR YOUR DIARY
Thursday 26 August 2010
Please let us have your email address and, from time to time,
we will keep you informed about:
§
§
§
§
Important news about vitiligo.
Vitiligo Society events.
Latest research.
New Treatment updates.
Simply log on to our website as follows and enter your details
www.vitiligosociety.org.uk/mailing.html
Don`t worry, we won`t share your information with anybody
else and will send only occasional emails.
16 Dispatches No 54 | July 2010
Living With Vitiligo
Members Meeting
125 Kennington Road SE11 6SF
starting at 17.00 (Please let us know
if you are attending.)
Saturday 9 October 2010
Living With Vitiligo
Parents’ Support Group
125 Kennington Road SE11 6SF
starting at 14.00