Download Autumn-Winter 2014

NEWSLETTER JOURNAL
A u t u m n / W i n t e r
2 0 1 4
I s s u e
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Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Vasculitis UK Shop
Winston the V-UK bear invites you to view the goods available from the charity. We
have a wide range of quality items which we are selling to raise awareness of
vasculitis and to boost the Trust’s funds. All profits will go towards meeting the Aims of
the charity. .
Below are some of the items we have for sale. There are many other items and you
can find details on the V-UK website: www.asculitis.org.uk/shop
You can pay for goods from the shop by cheque or by PayPal. To order please visit
the shop or e-mail: [email protected]
Logo T-shirt - £11.25 +
£2 p&p
Running Vest - £11.99 +
£2 p&p
Zipped Hoody - £20.99
+ £3 p&p
Waterproof coat with
hood - £20.99 + £3 p&p
Winston bear - £12.75 +
£3 p&p
Wristbands - 99p +
75p p&p
Victor rabbit - £12.75 +
£3 p&p
Set of 4 Pens - £1.99
+£1 p&p
Introducing the new range of “V” Jewellery
Made exclusively for Vasculitis UK by Lucy Riveiros
Silver plated jewellery with blue, green and white diamantes
Pendant + 16” chain
£14.99 + £1 p&p
Ring, sizeable - £7.99 +
£1 p&p
Stud Earrings - £9.99 +
£1 p&p
Cufflinks - £19.99 +
£2 p&p
To order by post send a note of your order, including the item name, size, colour and number required. Don’t forget
your name and address + phone number in case of query. For the full range see: www.vasculitis.org.uk/shop
Cheques should be made payable to Vasculitis UK. Please sent to V-UK Shop, c/o 37 Pinfold close, Swinton,
South Yorkshire, S64 8JE, and allow up to 14 days for some items which are not kept in stock.
Thank you
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Lucy - V-UK Shop coordinator
Vasculitis UK - Autumn /Winter 2014
www.vasculitis.org.uk
A letter from the Chairman
Our biannual Newsletter is the main showcase for Vasculitis UK, and is our most
widely circulated publication. We are greatly indebted to former editor, Pat
Fearnside, who has developed it into a very professional and informative
newsletter. Starting with this edition, Pat has handed over to a new editor,
Veronica Brunwin, who is also the mum of Danielle, one of our trustees.
We are justly proud of the Vasculitis UK website. It attracts “hits” from all around
the world. In the past year there were about 220,000 hits: 150,000 from the UK,
50,000 from the US, Canada, Australia, South. Africa and India .
There were also a further 20,000 from the non English-speaking part of the world - places as remote as Iran, Korea,
Azerbaijan, Chile and even Kyrgyzstan. But we are not complacent. The website is not static; the content is reviewed,
revised. amended and added to on a daily basis by our webmistress Pat Fearnside.
All the clinical content is written for us by world-leading specialists and is the best to be found anywhere on the Internet.
We strive to be the best!
We are sorry that this issue of the Newsletter is rather late, this was due to unforeseen technical difficulties. Hopefully the
Spring one will be back on track.
John Mills
Chairman
MAIN CONTENTS
From the Editor
Chairman’s report 2014
4
Creating a research strategy
5
Updates from V-UK funded
research
6
100,000 Genomes project
7
Low mood and depression
9
UKIVas research
10
What is medical research?
11
Potential effects of
Corticosteroid treatment
12
Young Vasculitis UK
13
Roving Reporter - Interview with
14
Chief cooks and bottle washers
16
Meeting the professionals
21
Postgraduate education
afternoon
23
YOU CAN HELP – Please help us contribute to the Research
strategy by completing the Questionnaire which will be posted to
members shortly with a return paid envelope. Thank you in advance
for your contribution.
Vasculitis Symposium 2015
24
Veronica Brunwin
Welcome to the Autumn/Winter Newsletter
from Vasculitis UK. We hope you find it
interesting and enjoyable.
As you will see from the Chairman’s report
and the Fundraising pages, our small
charity is growing very fast indeed, and we
hope that this bi-annual report to members
and supporters reflects the diversity of
activities in which the charity has been
involved.
As the charity’s level of activity grows, our ability to support and fund
medical research is also growing. Within this newsletter are a
number of articles which describe the projects currently being
supported, but we could do more.
The Trustees have been working on a Medical Research strategy,
which will ensure that the Trust’s funds are properly used, and that
we support the most worthy research projects.
You can fund out more about the Research Strategy in the article on
page 5, written by new Trustee, Mike Patnick. An important part of
this work is a consultation exercise to find out the views of the
charity’s members and supporters.
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Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Chairman’s Report 2014 - by John Mills at the AGM
A Roundup of activities in the year to March 2014
It is just four years since Vasculitis UK arose like a phoenix from the
ashes of the old Stuart Strange Vasculitis Trust. At that point there
were under 500 members, an annual income of £40,000, mainly in
the form of donations from people with vasculitis. Professor Lorraine
Harper was the only link between Vasculitis UK and the medical
professions and Birmingham QE the only hospital with which we had
any link.
In May 2014, Vasculitis UK had over 800 active members, with
another 3000 followers in the online discussion groups on Facebook
and Health Unlocked. Income at the end of the 2013-14 financial
year was £167,000, a 60% increase on the previous year – with
thanks due mainly to the efforts of all those wonderful fundraisers.
We now have links with almost all the key vasculitis professionals
and with most of the large hospitals – and we’re working on the rest.
Support.
SSVT was set up initially because the family of Stuart Strange could not find any information about Wegener’s
Granulomatosis. In 1993 there was no internet, no leaflets, nothing. Our philosophy is that the patient who is wellinformed and educated about their illness and understands it is better able to manage it, cope with it and live with it. In
contrast to1993, we now provide a one-to-one telephone and internet support, offering information and advice on
health matters and other aspects such as welfare benefits. We also have the comprehensive and highly popular
Vasculitis Route Map, which has just been republished in a more compact form as two separate books.
Newsletter
The biannual printed newsletter is the main showcase for Vasculitis UK. Thanks to former editor, Pat Fearnside, we
now have a very professional newsletter. Pat has now retired as editor and we have a new editor, Veronica Brunwin,
who is also the mum of Danielle, one of our trustees.
Website
The new Vasculitis UK website went “live” two years ago. It attracts ‘hits’ from all around the world and is excellently
managed by Pat Fearnside. In the past year there were about 220,000 ‘hits’ from people worldwide, 150,000 from the
UK, 50,000 from the USA, Canada, Australia, South Africa and India. There were another 20,000 from the non-Englishspeaking parts of the word; places as remote as Iran, Korea, Azerbaijan, Chile and even Kyrgyzstan.
Online and Local Support
The online discussion groups are also incredibly valuable sources of mutual support and mean that people suffering
from a rare disease no longer need to feel alone and isolated. Then there are the growing number of local support
groups all of which are independent and autonomous; but Vasculitis UK offers them encouragement and support .
Patient/ Professional Partnership.
This year we worked closely with the medical professionals in getting NICE to approve Rituximab. This involved a lot of
writing of submissions and attending meetings. Trustee Lisa Ranyell attended three NICE meetings and I attended two
on behalf of Vasculitis UK. We were able to share many members’ experiences of Rituximab with the NICE committee
and I’m sure these were very influential. This was an excellent example of the power of patient power and the benefits
of patients and professionals working together.
Research.
There are several ongoing research projects, the most important of which is probably the UK Vasculitis Registry.
Clinical data is the key to clinical research. The UKIVAS database now contains the clinical records of over 1000
vasculitis patients in the UK and Ireland, which makes it the largest vasculitis clinical database in the world – and it’s
growing fast.
You will read elsewhere in this issue about many aspects of research and how you can help by personally taking part in
research studies.
Raising Awareness of Vasculitis
Public awareness is not easy to raise, but over the past year the charity had a few exposures on television, several
newspaper and magazine articles and, of course, all of those amazing fundraisers in the Vasculitis t-shirts.
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Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Creating a Research Strategy for Vasculitis UK - report by Mike Patnick
As I am sure you are
all aware, one of the
main
aims
of
Vasculitis UK is to
fund research into
vasculitis and to-date
this has been on the
basis of examining ad
hoc requests to the
charity
to
fund
particular activities.
As the charity has grown and the amount of money
generously given to it has increased, it was clear to
the Trustees that a more comprehensive and open
approach was needed to ensure that the research it
funds is the best available and gives the best “value
for money”.
To date the research strategy had been fairly broad
so it was agreed by the Trustees that a more
detailed and meaningful strategy should be
developed and that formal methods agreed to
ensure that the best available research is funded. In
order to assist with this a Scientific Advisory Board
has been formed under the Chairmanship of
Professor David G.I. Scott - one of the foremost
authorities on vasculitis,. Also on the Board are Dr
David Jayne and Dr Richard Watts together with
three Vasculitis UK Trustees.
The SAB met for the first formal meeting in October
to begin the process of producing a research
strategy and a robust system of deciding which are
the best research applications to fund taking account
of the limited funds available,
Research is an expensive business and there is no
guarantee that research that the charity funds will be
successful. However, by having a clear strategy and
goals, together with stringent review (known as peer
review) we can hopefully maximize the chance of
success of the research the charity funds.
As part of the strategy Vasculitis UK will be
consulting with both patients and clinicians to obtain
their view on the type of research they believe to be
the best available use of charity money. This
consultation will help compile the Research Strategy.
This will clarify what we would like to fund and
enable us to inform researchers of this so that they
can develop their own research to be in line with
what is needed to help make progress in dealing
with vasculitis in all its forms.
Producing this complete Strategy will take some time
but once it is in place it will also help bring in
additional funds from Universities the NHS and
others to help the SAB make the money go further.
Whilst this is being undertaken, and we do hope that
you will take part in the survey, Vasculitis UK has
issued a Call for researchers to apply for funds,
which will enable the charity to succeed in its
research aims.
Treasurer’s Report - Financial Year 2013-2014
The Trust had an exceptionally good year so far as income was concerned. During 2013-14 income rose to the
highest level yet recorded at £160,577 compared to £102,192 in the previous year, an increase of 57%. As in
previous years the highest income came from fundraising via JustGiving.com which increased from £37,499 to
£68,081, an increase of 81.6%
Expenditure increased from £63,850 to £83,836, an increase of 33%. The largest individual expenditure was for
Research at £44,474 compared to £25,000 in 2013-13, a rise of 78%. Printing of the Newsletter/Journal
increased from £4,460 to £6,163, an increase of 38%. The increase was due to extra copies being printed for
the two issues and the increase in postal charges.
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Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Updates from Vasculitis UK Funded Research Projects
MYPAN - Trialling
alternative treatment for
childhood PAN
Vasculitis UK is proud to
be part funders of this
international trial, which
is being led by Dr Paul
Brogan of Great Ormond
Street
Hospital
for
Children, and University
College, London. The investigation is into the relative
e f f ec ti ve ne ss
of
Myc o p he n ol at e
ve rs us
Cyclophosphamide in treating PAN (Polyarteritis
Nodosa) in children. This is a rare condition,
especially in children, hence the need to make it an
international collaborative study involving other
centres throughout Europe.
Ethical committee approval for the trial was obtained
in September 2014 and the research team is currently
obtaining the remaining regulatory approvals. We
hope to open approximately 40 centres across
Europe; Great Ormond Street Hospital will be the first
centre to open and recruiting participants, hopefully by
the end of October 2014. This will be the first ever
randomised controlled trial in childhood PAN, and if it
is successful children will be spared the harmful sideeffects of Cyclophosphamide.
DCVAS. (Diagnostic Criteria and Classification for
Vasculitis) - a study to develop classification and
diagnostic criteria for primary systemic vasculitis
This very important multinational research study (one
of the biggest of its kind) aims to develop new
methods of diagnosing and classifying vasculitis.
Having clear diagnostic criteria will help to reduce
delays in making the correct diagnosis and starting
appropriate treatment. There are currently no agreed
diagnostic criteria for vasculitis, and the classification
criteria were developed before the availability of
modern tests and it is now time to revise these criteria.
Volunteers with vasculitis are currently being recruited
to take part in this important study. By volunteering,
you won’t change the future for yourself, but you might
help to make a huge difference for future vasculitis
sufferers. To join the study, speak to your consultant.
To be included in this study you must be:over 18 years of age with any form of vasculitis
diagnosed less than two years ago
willing to sign a consent form to allow
examination of your medical notes
willing to have either a face to face interview or
telephone interview with one of the research
team.
You must also be a patient at a hospital which is
participating in this study.**
At 6 months post diagnosis there is a short follow
up call or visit (usually during a routine
hospital appointment) to confirm diagnosis
and look at any residual symptoms.
To date DCVAS researchers at over 120 hospitals
across 32 countries have recruited over 4000
participants. The majority of participants who join the
study will have vasculitis but 1,500 people will be
those who initially presented with symptoms that could
have been vasculitis but turned out to be something
else. The data from this comparator group will be used
to establish the diagnostic criteria.
The DCVAS database is already contributing to further
research questions into vasculitis and will continue to
do so for years to come. This study is endorsed by
the American College of Rheumatology (ACR) and
the European League Against Rheumatism (EULAR).
** For a list of the participating centres or hospitals in
the UK consult the Vasculitis UK website
www.vasculitis.org.uk. For participating sites outside
the UK contact [email protected]
Check out some of the new pages on the V-UK website
Takayasu's Arteritis - www.vasculitis.org.uk/about-vasculitis/takayasu-arteritis
Behçet's Syndrome - www.vasculitis.org.uk/about-vasculitis/behcets-disease
Pain management - www.vasculitis.org.uk/living-with-vasculitis/dealing-with-pain
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Depression and
low mood -
www.vasculitis.org.uk/living-with-vasculitis/depression
Patient choice -
www.vasculitis.org.uk/living-with-vasculitis/patient-choices
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
The 100,000 Genome Project
April 2003 saw one of the most significant scientific
breakthroughs of modern times. After years of
painstaking research carried out by thousands of
dedicated scientists across the world, it was
announced that a complete map of the human DNA
– the genome – had finally been completed..
The Human Genome Project, as this work was
known, was the largest international collaboration
ever undertaken in biology, with British scientists
leading the global race to read the human genome
letter by letter, a technique called sequencing. The
UK has often led the world in scientific breakthroughs
and DNA was no exception. Crick and Watson
discovered the double helix structure of DNA and it
was a British double Nobel Prize winning scientist,
Fred Sanger, who discovered how to sequence it.
Now there is a real opportunity to turn the very
important scientific discoveries about DNA and the
way it works into a potentially life-saving reality for
NHS patients across the country.
What is genomics?
Most of us have heard of genetics, the study of the
way particular features or diseases are inherited
through genes passed down from one generation to
the next. But the more we learn about genes, the
more we understand that the old idea of having a
single gene for this, or a single gene for that, which
determines your fate is not – except in the case of
unusual inherited diseases - a good way of describing
the complexity of genes. In fact, groups of genes
work together and their activity is influenced by a
huge variety of environmental and other factors.
that were known to do things – about the same
number as a starfish. The role of the remainder of a
human’s genome – in fact a staggering 95 percent of
it - was a mystery. Now we know that the remaining
DNA is not irrelevant as was once thought but that
much of it has a critically important role, influencing,
regulating and controlling the rest. That’s why it’s
necessary to sequence the whole human genome
(rather than concentrating on bits of the 20,000 genes
currently used for diagnosis in medicine) if we are to
really understand the role of genes in health and
disease.
But people are very different, so studying only a small
number of genomes would not be enough to give
doctors and scientists a true picture of our genes and
their relationship to disease. Another key point is that
by itself, a genome can’t tell you very much. To make
sense of it, it is essential to know much more about
the person who donated it; details like symptoms and
when they first started, and physiological
measurements, like blood pressure (this sort of
information is called phenotypic data and provided by
clinicians) plus other data like previous illnesses,
medications and other medical records.
And this is where the NHS comes in. The way in
which the NHS is able to link a whole lifetime of
medical records with a person’s genome data and the
fact it can do this on a large scale is unique. The
richness of this data can help to understand disease
and to tease apart the complex relationship between
our genes, what happens to us in our lives and
illness.
You have a complete set of genes in almost every
cell in your body. One set of all these genes is called
a genome. Genomics is the study of the whole
genome and how it works but has also come to have
a broader meaning to include the way that the
genome is interpreted and the technologies that have
been developed because of it.
Why this focus on genomics now?
When the first draft of the whole human genome was
announced it was claimed that it would revolutionise
medical treatment. It had taken 13 years and over £2
billion to laboriously read every letter of our genetic
code. It took such a long time because the DNA
sequence of humans is very long – 3 billion letters –
and because the sequencing machines available at
the time were so slow and laborious.
Now claims are made that a human genome can be
sequenced in a few days for around £1000 and it’s
the leap in the speed and cost of technology that has
opened up the potential of genomics and brought it
within reach of mainstream healthcare.
Why sequence the whole genome?
One of the great surprises from the Human Genome
Project was that there were only about 20,000 genes
What can genomics do?
You can use it to predict how well a person will
respond to a treatment or find one that will work best
for them – so called personalised medicine. A good
example in use already is whether or not a woman’s
breast cancer is HER2 positive. If it is, Herceptin will
be very effective for her but not for someone who
doesn’t have the HER2 gene.
Continued on page 8
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Vasculitis UK - Autumn/Winter 2014
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The 100,000 Genome Project - continued
You can also use genomics to test how well a cancer
might respond to radiotherapy. For some that can
mean far fewer radiotherapy sessions. Or use it to find
the 20,000 people who currently use insulin for their
Type 1 diabetes but would do better on simple tablets.
Genomics can be used to track infectious disease,
precisely pinpointing the source and nature of the
outbreak through looking at the whole genomes of
bugs.
understanding of disease processes and the effect of
different treatments is immense.
The potential of genomics is huge, leading to more
precise diagnostics or earlier diagnosis, new medical
devices, faster clinical trials , new drugs and
treatments and potentially, in time, cures.
Elsewhere in this issue you can read about the
UKIVas Registry and about the RUDY study. Patient
databases like these, when eventually linked to the
genomes of those whose clinical records are on the
database, will lead to better treatment and greater
understanding of what causes these diseases. You
can contribute to this research by joining RUDY
yourself or pressing your consultant to enrol you in the
UKIVas Registry.
The Department of Health, through Genomics
England, is aiming to sequence the genomes of
100,000 NHS patients and link these to their medical
records. The initial focus will be on rare diseases and
cancer. The potential benefits of this for our
What does this mean for vasculitis?
Vasculitis researchers are already gearing up for this
new era of genomics. With support from Vasculitis UK
various projects are collecting patient data and blood
or tissue samples.
Vasculitis Awareness Reaches Whitehall
Earlier this year Vasculitis UK had a wonderful opportunity to increase awareness at the highest level of
government when the charity was invited to attend a round table meeting with Jeremy Hunt, then Secretary
of State for Health. The round table meeting was organized by Arthritis Research and involved people with
a group of similar conditions including osteoarthritis. osteoporosis, ankylosing spondylitis, rheumatoid
arthritis and vasculitis.
Tony Hart, whose son Giles has vasculitis, and who is an active supporter of Vasculitis UK, was the
representative at the meeting. Tony took the opportunity to raise issues with the Minister that affect us all
such as the availability of medical records between numerous professionals and treatment locations, and
also out-of-hours support - something that comes up very regularly. A number of these themes were
reflected by the Health Secretary in his closing remarks. They included:





Recognising these conditions as long term
Importance of continuing care
GP time and training
Joined up health records
Self-car and management
As Medical Director of Arthritis Research UK Professor Alan Silman said: “This was a fantastic opportunity
for the Secretary of State to hear about the difficulties that the health and social care system can
sometimes present to people with musculoskeletal conditions. With so many conditions represented
around the table he will also have got a renewed sense of the diverse nature of the conditions and he need
for greater personalization with the system.
Vasculitis UK would like to thank Tony Hart for giving up his time to attend the meeting on behalf of
vasculitis patients.
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Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Low Mood and Depression



Having negative or gloomy thoughts
Putting things off
Can’t be bothered to do everyday tasks
If these signs have been persistent and impacting on
day to day life then you may need to seek help.
Many patients with long term illness suffer from some
degree of low mood or depression. This is a normal
phenomenon and is often transient.
Depression is a common treatable condition. Having
depression does not mean that you are weak and
lazy. It does mean that you have a serious condition
which requires treatment.
Depression is not the same as the normal feelings of
sadness that people feel when they experience
difficult events in their life. Depression prevents
people from progressing normally with their lives, and
taking part in activities they normally enjoy.
These are just some of the signs someone may be
depressed:





Feeling low, sad, guilty, upset or numb, crying,
Feeling alone or angry.
Losing interest or enjoyment in things
Sleep problems
Changes in weight, appetite and eating
When a problem persists this should be discussed
with your GP or consultant. A short course of antidepressants may be prescribed. Occasionally
counselling may be indicated.
Improve your mood: A guide to managing low mood
and depression
Manchester Mental Health and Social Care Trust,
has produced a guide which covers a number of
different techniques to help you manage low mood
and depression.
The techniques are provided under the headings of
"See it", "Treat it" and "Beat it".
You can view the guide by visiting:
w w w . va s c u l i t i s .o r g . u k / l i vi n g - wi t h - va s c u l i t i s /
depression:
Donating to Vasculitis UK
The work of Vasculitis UK is entirely dependent on our fantastic supporters.
Without your financial support we could not meet our aims of supporting
patients, raising awareness and funding vasculitis research here in the UK.
Whether your donation was £5 or £5000, the charity is so very grateful that
you thought of us, and we send our heartfelt thanks.
If you would like to support Vasculitis UK, you don’t need to run a marathon or
jump out of a plane. There are many easy ways to make a voluntary donation
by cheque, standing order (donation forms enclosed with this Newsletter) or
via donations at JustGiving com or PayPal.
Just £6 per year will pay for printing and posting your two Newsletters a year.
Gift Aid
Remember that Gift Aid can increase your donation by 25 per cent at no extra
cost to you! For further information about donating to Vasculitis UK, please
contact the Treasurer: Patricia Fearnside, 37 Pinfold Close, Swinton, South
Yorkshire, S64 8JE - [email protected] - 01709 583722.
Portsmouth Vasculitis Support Group
The first meeting of the group was a resounding success. It was organised by Portsmouth Hospital, but
they are looking for a lay-person to take over or to work with the present team. If you are interested
please contact Susan Mills for further information. Details on page 28
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Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
UKIVAS Registry: nearly 2 years in operation
and growing rapidly
Richard Watts and Mark Little, UKIVAS registry cochairs
As vasculitis is a rare disease we need to link many
hospitals together to assemble a group large enough
to allow us to ask and answer important questions
about what causes the disease, who is likely to
relapse, who we can stop treatment on and what the
best treatment is.
With generous support from Vasculitis UK and
Kidney Research UK the UKIVAS registry was
designed to achieve this across the British Isles.
After a slow but steady initial recruitment, the
number getting involved is now accelerating and 21
centres are now adding data, with others in the
pipeline. I am delighted to report that we have to
date recruited 1258 patients with vasculitis, making
this probably the largest such registry in the world:
Researchers and clinicians are starting to use this
almost unparalleled resource to test their ideas. For
example, investigators in Cambridge are interested
in determining whether there are genetic reasons for
the variation in response to rituximab and are using
the data in the registry to identify people who have
received the drug and to link this clinical information
to DNA studies.
On a wider horizon, we are looking at ways of joining
the registry up with other registries around the world
to create a “super-registry”, creating a data
repository of a size never assembled before.
The project owes its success to an ever suffering
registry steering committee who have been pushing
this project since 2010: Alan Salama, Raashid
Luqmani, Paul Brogan, David Jayne, Mike Venning,
Afzal Chaudhry, Jackie Andrews, Jo Robson,
Anthea Craven, Neil Basu and Peter Lanyon. The
critical software development has been done by Joe
Rosa and Joe Barrett in Oxford University and we
are grateful to administrative support provided by the
Renal Registry.
Walk price includes entrance to The Kitchen@Tower and a Thames Walk Goodie Bag
including T-shirt, fundraising information, and more !
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Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
What is “Medical Research”
We all accept that
medical research is
essential if medicine,
including diagnosis and
treatment, is to change
and improve.
In
these
days
of
“Evidence
Based
Treatment” it is research
that provides the evidence. The UK leads the world
in vasculitis research. But what is “research”? We
tend to think of research as being about test tubes
and microscopes, but in reality, it comes in several
forms:Scientific Research.
This usually take place in a laboratory and may
involve test tubes and microscopes, but often
involves many other pieces of sophisticated, complex
and very expensive equipment. Scientific research
looks at the fundamental processes in a disease,
often at cell level, including studying the biochemistry
and how different components interact – such as
ANCA.
the data from genetic studies to understand how an
individual’s genetic map relate to their disease
experience.
Literature Research.
A great deal of research takes place worldwide.
Literature research involves looking
at all the
published papers on a particular topic, then
comparing the results from and the strength of the
findings, then coming to a consensus conclusion.
Collaborative Research.
With a rare or very rare disease, any individual
hospital or centre might have only a few patients with
that disease. Good evidence requires strength of
numbers to make it convincing, so some research
involves numerous centres around the country,
working together to an agreed protocol and sharing
knowledge.
This collaboration may be across centres in Europe
or the US or worldwide. An example of this is the
DCVas study which is led by Professor Raashid
Luqmani at Oxford. It involves 150 centres worldwide
– including the UK, Europe, US, Australia, Japan,
South America – even Russia.
Scientific research sometimes involves working on
tissue cultures or occasionally even live animals,
usually small mammals like mice that reproduce
rapidly and have a high metabolic rate and short life
span, making it easier to observe effects in
subsequent generations. These specially bred mice
may come from genetically modified stock.
Pharmaceutical Research and Drug Trials
Pharmaceutical companies carry out a great deal of
innovative research which frequently follows up basic
scientific research carried out in academic
institutions. Developing completely new drugs is
incredibly expensive.
Clinical Research.
This mainly takes place in larger teaching hospitals
and involves patients. It might involve questionnaires,
looking at how effective are different procedures and
treatment, collecting blood and tissue samples, drug
trials and looking at different aspects of disease. It
may also involve healthy people as “controls” for
purposes of comparison.
Most of the drugs used in treating rare diseases like
vasculitis were originally developed for other uses,
such as treating cancer, treating more common
diseases such as rheumatoid arthritis or for immune
suppression in transplant surgery. Whatever the
origins of the drug, there has to be extensive testing
through drug trials to establish its safety,
effectiveness and identify any undesired side effects.
Database research.
This involves looking at clinical information that has
been collected over a period and stored in a
database or several databases. Analysis of these
data, which may be about hundreds of patients, can
answer many questions. The UKIVas database is an
example. Linking these data to new techniques such
as genomic sequencing can answer many more. It is
essential that different databases are compatible so
that the data can be compared.
The International Vasculitis and ANCA Workshop
takes place every 2 years and is in London next year.
This is the “showcase” for vasculitis research, where
many hundreds of doctors gather to present and
share their research papers. At the last conference,
in Paris last year, 351 individual pieces of research
were presented and discussed.
A very high
proportion of this research was carried out in the UK.
Genetic Research.
This is a rapidly expanding field of research, which
has huge potential. It looks for the genetic factors
behind the disease. However just looking at a
person’s DNA means very little on its own; it also
requires a wealth of available clinical data to link with
We need your views
Shortly you will receive a form for a survey being
carried out by the new Vasculitis UK Scientific
Advisory Board to decide what sort of research
should be supported and funded by Vasculitis UK.
This is your opportunity to influence the decisions.
11
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Potential Side Effects of Corticosteroid treatments
Description: skeletal complications upon being treated
with corticosteroids therapy are generally of two main
types:
with other diseases. Overall, these conditions
(particularly avascular necrosis) are quite rare
corticosteroid-induced side effects.
Osteoporosis (= fragile bones). At later stages,
osteoporosis increases the risk of fractures, including
those of the vertebrae and the femur. Fractures of the
vertebrae can occur after trauma or simply
spontaneously during your everyday life. They
generally are felt by pain in the back. This is followed
by intense pain that requires immediate rest for relief.
Subjects at risk: women are more at risk for
osteoporosis or osteonecrosis than men. The risk of
corticosteroid-induced osteoporosis increases with
age. Also, certain conditions can predispose you to
these bone complications. Finally, the risk increases
with duration and dosage of cortisone. The risk of
contracting osteoporosis increases even with low
dosages (approximately 5 mg per day).
Long-term versus short-term treatment: osteoporosis
is a disease that can become active in the body in the
earliest weeks of treatment. However, it usually
becomes problematic in patients undergoing longterm corticosteroid therapy. The risk of avascular
necrosis is greater in patients treated for longer
periods as well.
Prevention/treatment: the prevention and treatment of
osteoporosis consists of lifestyle changes (exercise,
abstaining from alcohol, no smoking, maintaining a
healthy weight, regular intake of vitamin D and
calcium) and when required, prescription drugs such
as bisphosphonate. For post-menopausal women,
menopause therapy may prove beneficial. There are
no known preventative treatments of avascular
necrosis. Other risk factors (especially alcohol) should
be avoided. Treatment could involve surgery or a
prolonged period of bed rest.
 Osteoporosis
Avascular necrosis is the degeneration and
destruction of a bone, commonly the femoral head.
This is a result of a loss of blood supply to the bone. It
comes in various forms and symptoms are not
particular (sometimes there are none at all). These
may include sudden pain in one hip or leg. However,
there is usually a gradual onset of pain when one is
standing or walking. This pain becomes less when the
person rests. The condition progresses to eventually
limit the individual’s movement and carry a limp. The
diagnosis is made after the results of an X-ray or MRI.
Frequency: the frequency of osteoporosis depends on
the dose and duration of the corticosteroid therapy but
also on the condition requiring cortisone treatment.
For instance, it is more common in cases of
rheumatoid arthritis but much rarer in cases of
asthma. It is also the case for avascular necrosis
which is much more common with cases of lupus than
12
Screening: a radiological bone scan may be required
before corticosteroids to assess the patient's bone
strength and decide whether preventative treatment of
osteoporosis is needed. Regular scans and
examinations of the patient's bones could follow.
Avascular necrosis can be diagnosed by performing
an X-ray or MRI.
Reversibility: several studies show that osteoporosis
improves in the months after cessation of
corticosteroids. However, the lesions caused by
osteonecrosis are irreversible.
Vasculitis UK is indebted to Dr Laurence Fardet and
his colleagues of the Internal Medicine Department at
Saint Antoine Hospital, Paris, France for giving
permission to reproduce this section from their
website "Cortisone-info" (http://cortisone-info.com/).
The website received the HONcode label in 2012 and
it has not received any financial industrial support.
Vasculitis UK - Autumn/Winter2014
www.vasculitis.org.uk
Young Vasculitis UK - Why young people should talk to their peers
Danielle Brunwin and Gareth Garner
There is a lot of stigma associated with certain
diseases such as vasculitis because people may look
completely fine on the outside but inside is a very
different matter.
Today the group has 86 members, including several
from other countries. There is very much a sense of
camaraderie within the group and like in the main VUK
group, many rush to the aid of those who need and
ask for help.
Young people talking to their peers about their illness
can be a very stressful and a nervous time for some.
However, it is definitely a good idea to explain your
vasculitis in enough detail so your peers have a good
understanding. This will allow them to adapt the way
they go about certain tasks with you such as bike
riding to help accommodate you. Such adaptations
could allow you to feel less limited by your disease
and help you recover and enjoy your life without being
too hindered by vasculitis. Furthermore, a general
knowledge of your own disease will allow your friends
to know what can trigger certain symptoms and, in a
worst case scenario, what to do in an emergency.
As the administrators we would like to take this
opportunity to announce some new improvements to
the group. We are going to introduce the “Happy
Monday” initiative. Every Monday we would like our
members to post things that they have found helpful
and positive: be it a piece of music, vitamin, exercise
or new hobby - the possibilities are endless.
Some tips that will help you to explain your illness are:



Learn as much as possible about your type of
vasculitis as they may ask questions
Be aware that they may not have a good working
knowledge of your problem
Take your time and do not be embarrassed
because after all they are your friends and will try
their best to help you where possible.
Just over a year ago, Vasculitis UK started a new
venture by creating a new Facebook support group for
young people, Young Vasculitis UK. Back in 1995 and
even in 2011 when Danni and Gareth, the group’s two
administrators were diagnosed, Vasculitis in young
people was considered rare and a minority within the
VUK community. Since then there has been a boom in
the number of young people being diagnosed with
Vasculitis.
Our other new improvement is that we would love to
hear about anything great that has happened in our
members’ lives – perhaps a new job, an engagement,
passing exams or making a really yummy cake. If you
private message these events to Danni and Gareth we
will put them in a featured post, which will change
every week. This is so that we can celebrate the great
achievements of our members. The post will be the
first post people see when they look at the group to
help keep our group a positive place of
encouragement and support.
We would love to invite anyone who is under 30 to join
us on Facebook. You can join at: www.facebook.com/
groups/505201572880821/
Danni and Gareth
Going through adolescence is hard enough without a
chronic illness and there was a growing demand for a
support network for the younger generation of
Vasculitis sufferers to which VUK responded.
Time for reflection and a smile
13
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
An Interview With - The Roving Reporter speaks to Lynne
Jacques about her involvement with PACES medical exams
Lynne was diagnosed with Microscopic Polyangiitis in
2010. Here she tells us about her involvement with
PACES.
Thanks for taking part in the interview Lynne. Perhaps
we could start with you telling us what are the PACES
exams?
Membership of the Royal Colleges of
Physicians (MRCP) is a postgraduate medical
diploma in the United Kingdom (UK). The
examinations are run by the Federation of the Medical
Royal Colleges – the Royal College of Physicians of
London, the Royal College of Physicians of
Edinburgh, and the Royal College of Physicians and
Surgeons of Glasgow and PACES is the Clinical
Examination Part of the Exam. The hospital I attend
does the exams for The Edinburgh College. It also
does exams for its own students wanting to become
registrars, then specialise.
How did you become involved in the exams?
I was found to have a fibrosis of the lung. My chest
consultant asked if I would be willing to be a ‘patient’
for the PACES exams which are held 2 or 3 times a
year. Of course, I said yes immediately.
This is something our members probably know little
about Lynne, so how does your day go?
The examination centre is divided into stations and on
arrival we are given a drink and if it is morning we can
have some Danish pastries and orange juice and if
afternoon we may be offered a lunch bag. I prefer the
mornings because of the Danish, although this isn’t
good for the diet but is very enjoyable.
I am usually in a double room with another ‘chest
patient’. The room is divided by a screen to offer
privacy but we can, and do, talk. There is always
someone on hand to attend to our needs. It’s all really
friendly.
What is the room like?
It is set up as a hospital with a trolley bed with
bedding and a bedside cabinet with everything that
could be needed. A jug of water, hand sanitizer pens,
pencils, paper and a peak flow meter. Over the bed
there is a notice that says ‘This patient complains of
breathlessness on exertion’.
So, what happens next?
We undress and put on a hospital gown (not terribly
elegant). Then it is just a matter of waiting. There’s a
good chance to relax, catch up with some reading.,
and there are always newspapers available. .
The examiners come and introduce themselves and
listen to my chest to see what the candidates will be
able to hear. Apparently, on examination, one side of
my chest sounds like Velcro. They also look for
clubbing of the fingers and other clues which I don’t
have. In my case the only thing is the ‘Velcro sound’
14
which must be a bit difficult for them, but we are all
individuals aren’t we?
We may be examined from 3 to 10 times. The
candidates are taken to each station in turn. They
examine a patient for 10 minutes only and then are
asked questioned for 5 minutes. The examiners
discuss their findings when this is over and the
candidates leave the room. It is always interesting to
see if they agree with what I thought.
What does the examination entail?
A candidate will introduce him/her self and ask if they
can examine me. They use the sanitizer and then it
follows the same process. Visual - looking at hands,
feet, eyes and listening to the chest. They are marked
on how polite and careful they are. I remember one
losing marks because he was too rough!
And the examiners questions, what are the candidates
asked?
They are asked for their findings, what could have
caused it and how what tests they would like to do to
confirm the diagnosis. It is really interesting and you
become quite good at guessing who will pass.
You mentioned other stations. What happens there?
So far I have met a lady with eye problems, a heart
patient, and many others so I assume there will be
most things covered. Sometimes people are
pretending to have some illness. Last time a man had
to pretend he had something terminal and the
candidates had to break the news.
Finally Lynne, you are doing a wonderful job in the
teaching of doctors about vasculitis, but how do you
feel about being a “guinea pig patient’?
At first I felt I wanted to give something back, as I was
really grateful for the care I had received. After
learning about the process I am reassured that our
doctors and G.P’s have to go through such a rigorous
examination process. By the way, I always take a
copy of the Vasculitis Newsletter and leave it visible
(on the suggestion of one examiner) and am really
pleased if a candidate mentions Vasculitis. If not there
is always the chance they will go away and look it up!
We certainly hope they do Lynne. Thank you for
spreading the vasculitis word, and for giving us an
insight into a different world.
R.R
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
”Carry on Nurse” or laughter really is the very best medicine
Isabella makes us smile with some of her anecdotes
about being thrown into the unexpected role of
becoming a carer for her husband Ivor.
At one point during his illness he had to be tube-fed
and while tenderly holding his face to kiss him
goodnight, I managed to pull on his breathing tube,
which he assures me, is really uncomfortable and
slightly stomach churning.
The one that worried me most was when I managed
to tangle his catheter tube in the wheel of his
wheelchair. My hubby was shouting out in pain as the
balloon was being tugged through.
No one ever really expects to become a carer, it might
enter our thoughts if an elderly parent becomes
unwell, but otherwise we just take it for granted that
everything will be fine and we'll lead full and healthy
lives, as will our loved ones.
Imagine my surprise when my previously fit and
healthy husband became very unwell overnight, and
our lives were turned upside down. As the months
passed, he became increasingly more dependent on
me. I had become a carer.
Nobody prepares you for the role of being a carer. I've
certainly never nursed anybody before, other than my
children, I've never administered drugs before, and
my only previous attempt at personal care resulted in
me dropping my poor mum in law back into a bed pan
of her own wee.
Initially it was quite frightening as I struggled to offer
the best possible standard of care that I could. I know
it was also quite frightening for my hubby to be cared
for by someone whom he knew had no previous
experience.
So what kind of carer have I become? Well I never
before thought of myself as clumsy or bumbling, but it
appears that I do have my moments and it generally
results in either myself or my hubby being slightly
injured or embarrassed.
Our mishaps started quite early on when my hubby
was immobile and I tried to help him shower, as he
insisted only I could help. I attempted to help him into
a standing position and he managed to head-butt-my
cheek with considerable force. All the staff were
laughing,. Me, well. I was crying. I did eventually find
it funny.
When my husband first needed to use a wheelchair, I
thought, this will be just like pushing my children in a
buggy. I was wrong as my hubby found out when I hit
the kerb and almost tipped him out.
I was helping to administer his nebuliser through a
small oxygen bottle one day, when my hubby began
flailing his arms around and pulling at his mask. The
oxygen bottle was empty and he was slightly
suffocating.
As for bile bags, a whole new experience, the
collector of forest green bile. When my hubby first had
one fitted I picked it up to look at it and the nurse had
not closed the tap so my lovely little pumps were
covered in bright green bile.
The most recent incident was by far the best yet. I
had offered my hubby personal care but he refused,
so I had a quick peek under the blanket to check he
was ok "down below", and there was his toilet bag,
under his legs. I put it in the bathroom and thought no
more of it. The next day I offered my hubby a wash
again and this time he gladly accepted. I went into his
toilet bag and found something brown wrapped up in
a couple of napkins. I wondered why has my hubby
wrapped his poo up and put it in here. I tentatively
picked it up, threw it into the toilet and flushed it. The
offending package didn't go anywhere and the water
in the toilet began to rise. I quickly plunged my hand
in and pulled out the gift wrapped poo, it was at least
a number one on the poo scale, so not too
bad..........or was it? No it was his jacket potato from
lunch that he had hidden!
The catalogue of disasters are far too many to
mention and my family and friends have now
nicknamed me "carry on nurse" (the more mature
among us will know what that means). I know when
talking to other carers that so many of them have
similar experiences, we all try so hard to get it right
and provide an extraordinary standard of care, or
something like that.
Everything about becoming a carer for someone who
is very ill is stressful and tiring and at times you can
feel overwhelmed. These are the times when my
hubby and I manage to have fun remembering all
these funny mishaps. Laughter is, after all, the very
best medicine.
Isabella Aston
15
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Chief Cooks and Bottle Washers
Jann Landles is Hon Secretary of Vasculitis UK. She is also a Trustee of ARMA
(Arthritis and Musculoskeletal Alliance). ARMA is an umbrella organisation
representing over 40 health charities in the UK, and has great influence in the world of
musculoskeletal and other immune diseases., particularly by representing the views of
charities to government.
Jann was recently asked to do a Blog for the ARMA e-News. This is reproduced below
and details how a small charity like Vasculitis UK operates, and her involvement with
both charities and how membership of ARMA. has impacted on our own charity.
In the European Union, a disease is defined as rare
when it affects less than 1 in 2000 people. The
European Commission defines rare diseases as ‘lifethreatening or chronically debilitating diseases which
are of such low prevalence that special combined
efforts are needed to address them’. With 15
systemic vasculitis disease phenotypes and several
subsets, some of these diseases being very rare but
not all of them life threatening, you can begin to
image the issues facing Vasculitis UK.
Like many small charities, Vasculitis UK was created
by relatives in response to the loss of a loved one.
Running a national charity to support people with a
vasculitis condition in the years before the internet
proved difficult.
The Trustees of Vasculitis UK looked at what issues
they needed to tackle, and the funds they had to
tackle them with, and realised that to achieve
progress would require significant input by
themselves and other willing volunteers.
From feedback from members and their families, one
of the first issues to be tackled was the provision of
reliable information. In common with many patients
when finding out that they have a chronic, incurable
disease, they look for further information. What they
found was often out of date and cause great alarm
rather than reassurance. The trustees set out
addressing this gap.
With the specialist IT help, and working with a
vasculitis specialist they build a body of accurate and
current information that can be easily read by patients
and non-specialist staff. This was made it available
both through the web but also in printed material. The
production of this information (the Route Map for
Vasculitis) involved several Trustees and one acted
as editor in a full- time commitment of six months.
I joined the Trustees of Vasculitis UK in 2012 after
being diagnosed with GPA (Wegener’s) while this
labour of love was still in progress. Following the
example of my fellow Trustees I also got involved
working at an operational level. My initial task was to
propose a revamp of the telephony used for the Help
Line. This has proved a successful initiative and VUK
trustees man the help line from their homes
nationwide on a rotational basis, responding to
enquiries on a wide range of topics such referral for a
second opinion or accessing benefits.
16
Like many other charities Vasculitis UK is unfunded
and relies entirely on donations from supporters. I
have had a period of managing the fundraisers on
behalf of the organisation. The fundraiser
management role is time consuming however it is
time well spent as vasculitis patients and their friends
and family work very hard to support our objectives.
With increasing numbers of people undertaking
sponsored events on our behalf it has become
necessary for Vasculitis UK to have several people
taking an active role to ensure we take the time to
process and thank everyone.
While looking for opportunities to raise awareness of
the condition supported by Vasculitis UK we identified
that we needed the support of a large, more inclusive
organisation. ARMA provided the framework and
opportunities to network with other organisations with
similar aims and issues.
Having represented,
Vasculitis UK at policy meetings and, seeing the
value the organisation offered (including access to a
wider range of resources that would not normally be
available to a smaller charity run by volunteers), I
decided to stand for Trustee. I hope that, in the role
of ARMA trustee, I can work with the small charities
involved and help them to represent their interest.
Also, for the first time this year, the charity joined
other ARMA members in the ARMA village at the
rheumatology conference in Liverpool. This was our
first conference, it was undertaken to raise
awareness of the charity and Vasculitis conditions. It
was organised and manned by Trustees. Even the
Chairman has several roles including acting as a
patient representative on a number of national and
international bodies, reviewing treatment and
guidelines such as EUVAS, as well as the
Specialised Services Clinical Reference Group.
So why do we do it? Why are we both chief cooks
and bottle washers? Well it is not so long ago that all
of us can remember the lack of information available
when each of us was told of our conditions. The
feedback we get such as “I use the information from
Vasculitis UK to help healthcare providers understand
the issues that affect me” or “Thank you so much.
We sometimes feel really alone with this, your
support means the world.”
Jann Landles
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Fundraising with the UK Ghostbusters by Susan Mills
Being involved as a trustee of Vasculitis UK brings a
diverse range of experiences. Vasculitis UK has
fantastic fundraisers and fundraising support. This
support comes in all forms; and as well as all the
wonderful fundraisers who take part in walks,
marathons and cycling events, there are other more
“unusual” events.
were joined by Jacqui Moran, another VUK trustee,
who lives in London.
We are sometimes asked to take part in these events
and it has involved dressing as pirates for a nautically
-themed charity ball, or as witch and wizard for a
fundraising Halloween party. The most unusual was
a recent invitation to attend the “Film and Comic
Convention” in London – a very new and different
experience for us.
In February of this year,
very sadly, the actor
Harold Ramis (best
known as Dr Spengler in
the ‘Ghostbusters’ 1980s
film series) lost his life to
c ompl ica tio ns
f rom
Vasculitis. He had
suffered with this awful
disease
for
two
years. “The Ghostbusters” still have a huge fan base
in the UK, but those boys and girls who were fans in
the 80’s are now mature adults, creeping towards
middle age, with more money in their pockets to
indulge their fantasies and enthusiasms.
Apparently there are many Ghostbuster groups of
enthusiasts around the UK. They all meet
occasionally to relive the Ghostbuster experience,
attending the various film and comic conventions
held throughout the UK in the Spring and Summer.
Whilst doing so they support different charities.
Following Harold Ramis’s death, the UK Ghostbuster
enthusiasts tried desperately to find as much
information as they could about vasculitis, a
mysterious disease that not one of them had heard of
before. Eventually they made contact with Vasculitis
UK through the VUK website contact page.
We were then asked if Vasculitis UK could be their
chosen charity for 2014/2015. They asked for
collection buckets, promotional material and
information leaflets to share at these conventions.
The first convention was in the Spring of this year in
Newcastle, followed by another in Milton Keynes. As
the UK Ghostbusters have learned more about
Vasculitis their eagerness to support people
diagnosed with Vasculitis has grown too.
The most recent Film and Comic Convention
Weekend was in London at the vast Earls Court
Arena. John and I were invited to go and join the
Ghostbusters at their stand and gain first-hand
experience of visiting one of these conventions. We
On arrival there was a long queue for tickets, but
fortunately we waited in the lovely warm sunshine. It
was very entertaining watching all the fanatical
followers attending the convention, many dressed in
their favourite fantasy character costumes – from
“Star Wars” Storm Troopers and “Planet of the Apes”
primates to Dr Spock, “Dr Who” and Alice in
Wonderland look-alikes. Being “Oldies”, I’m afraid the
significance of many of the costumes was rather lost
on us!
On entering Earls Court we could hardly believe our
eyes. There were dozens of stands, all devoted to
their own particular film or comic series. There were
stands with celebrities signing books and comics, a
stage where people could act out their favourite
character in front of an audience, and participation
stands to have your photo taken with your favourite
character
We walked around in a daze, absolutely amazed and
astounded by the variety and colourfulness of the
stands, the enthusiasm of the people involved and
the good humour and smiles on so many faces.
80,000 people had passed through the main
entrance on the Saturday and on Sunday almost the
same number were expected to attend.
We were made very welcome by the Ghostbusters. It
was fab to meet them all in person: girls and boys
with an age range of around 30 to 40 . When we
arrived at their stand they had already collected over
£500 for VUK and had run out of leaflets and
promotional material. We all chatted for a while and
we met the founder of the group who informed us
that they would like to make VUK their permanent
official charity and support us in the foreseeable
future.
Jacqui, John and myself came away from our new
experience of attending the “Film and Comic Con”
with smiles on our faces, having seen so many
friendly people enjoying themselves. We made new
friends and had the thought that this might not be the
only Film and Comic Convention we will attend!
17
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Thank you to our wonderful fundraisers
Simon Coate competed in the Henley Triathlon, to
raise funds, as his mum has Takayasu’s Arteritis.
Congratulations, Simon on raising £249.
Colin and Dan have cycled the 140 mile Coast to
Coast route, from Whitehaven to Newcastle, in aid of
Vasculitis UK. They finished the ride a day ahead of
schedule – was the very small tent an incentive to
keep cycling? Thank you for the donation of £755.00
Danielle Alton undertook the significant challenge of
cycling from London to Paris in July, despite having
fractured her wrist. Along with her friends, she
reached her target and raised £185. Thank you!
Young vasculitis patient, 15 year old Joe Akllen took
part in the L’Eroica Britannia, a 55 mile race on 22
June because he wanted to raise money for fellow
sufferers. The race took place in fantastic weather and
Joe not only came second but raised £260. Well done
Joe!
Andy Bassett and four friends ran the Cambridge Half
Marathon earlier this year: Andy was joined by Ashley
Read, Paul Mills, Pete Stocker and Thom Dobbin who
raised £659 between them. Thank you.
Julie Brady decided to on a fundraiser with a World
Cup theme in July - World Cup sweepstake, "beat the
goalie" competition and cake stall with colleagues in
Lancashire raised £387 which was matched by the
Beaverbrooks Charitable Trust. Julie's husband,
Steve, has vasculitis.
Paul Brightwell's wife has recently been diagnosed
with Vasculitis. They work together and because she
was ill he didn't get time to shave. So he grew a beard
and then shaved it off, raising £250 for Vasculitis UK
as he did so.
British 10K - Team Tavis’ have once again competed
in the British 10k London Run 2014. They raised £935
in total. Another group of friends, Team Bowtell Dhami
Tansey, entered on our behalf and raised a total of
£1,011.72. Another of our wonderful runners was
Melanie Brown, who raised £490 for VUK. Melanie is
cousin-in-law to Martin Makin, who has also been
actively running for Vasculitis UK. Congratulations to
all the runners!
Carol Bryant and Rachel Hulme have successfully run
The Colour Run 5k in gratitude for the support
provided to their family by VUK. They raised £395.
Thank you.
Andrew Delnevo and David Cartwright have been
pushing themselves to the limits, running two grueling
obstacle races over the summer the Spartan Legends
and Dirty Dozen.
David has been diagnosed with
GPA, after 18 months of undiagnosed symptoms.
They raised £260.00. Thank you from all at VUK.
Another Coast to Coast challenge was completed by
Emma Drinkall and Nick not forgetting Mouse their
trusty companion, in honour of her ‘inspirational’
mother who has Vasculitis. Their donation of £845 is
gratefully received.
Bethany Edwards has done an 8 mile sponsored walk
for Vasculitis UK and raised £95, because her
grandmother (aka Cariad) has vasculitis. Well done,
Bethany!
David Elvidge, who is a member of Hunstanton
Methodist Church, entered the Grand East Anglia Run
on 4th May 2014, raising over £400.
Gavin Fitzpatrick and Matt Draper have completed the
Manchester to Blackpool Bike Ride 2014, in memory
of Margaret Townsend, who, Matt writes, was just
about the best mother in law you could have, and a
great laugh, always up for a giggle. They have raised
£403 for Vasculitis UK. Thank you.
Great North Run - Several runners completed the
Great North Run this year, in aid of Vasculitis UK. In
spite of not being a fan of running, Faye Bell
completed the race, and raised £494.44. Richard
Holland ran in memory of his much loved Uncle Phil,
and sends a donation of £620. Helen Mayor
successfully jogged into South Shields in a time of 2
hours 23 minutes, her second time running the race
since being diagnosed with GPA, and raised £515 in
the process, and Annie Jennings also finished race
and raised £200 in honour of her friend Fiona Elliott,
who suffers from Cryoglobulinemia. Congratulations to
all who took part – we
are very grateful!
Margaret Butler of Crewe raised £20 by selling knitted
items to friends in April. Thank you, Margaret.
The members of Castle Eden Golf Club, Castle Eden,
Cleveland, have donated £1,250 to Vasculitis UK. This
was from the “Donation Board” where charities are
suggested by members and then receive a donation.
Thank you for choosing us.
18
Continued in page 19:
Vasculitis UK - Autumn/Winter2014
www.vasculitis.org.uk
Thanks to our wonderful fundraisers - continued
Loughborough Half Marathon. He not only completed
the course, but raised £768 for Vasculitis UK.
Matt McIlgrew raised £500 by running all 26.3 miles of
the Brighton Marathon in April in memory of his friend,
Tom Taylor, who died of Vasculitis in 2011 at the
young age of 47.
Following on from the success of a similar event in
2011, Holly Hampshire has organized a charity run
and cycle ride in aid of Vasculitis UK. The contestants
and their friends raised over £2,429.00. Thank you
very much to everyone involved!
Dave Hampton, father of Dan, completed the Henley
Classic Swim, an upstream race in the freezing
waters, of the River Thames, starting at 4.30am. Dave
wanted to raise funds for Vasculitis UK, to help
promote early diagnosis. Thank you to everyone who
helped him to achieve his target of £900.
Sheila Harrod has been leading choirs in Swindon for
many years. To celebrate turning seventy she staged
a number of events including a concert given by past
students, including the talented Bean family. An exit
collection raised £255.44 for Vasculitis UK.
Debbie and Tom Hewitt reached the milestone of their
Ruby Wedding anniversary on 6th July, and asked
friends who celebrated with them to donate to
Vasculitis UK, in support of vasculitis research
projects. Thank you for your generous donation of
£660.
Nicola Hodgetts decided to give up Facebook for a
whole month, to raise funds for Vasculitis UK. She
claims that it is unhealthy obsession, but also writes
that the information provided was very helpful when
she was first diagnosed in 2009. We missed your
posts, Nic, but are very grateful for the £322.50 you
have raised.
Tony Hookings competed in the Rat Race Dirty
Weekend raising £80 for Vasculitis UK.
Paul Hunter very bravely skydived for Jessica Watson
who is aged 10 and has CNS. Paul raised the
marvelous sum of £900
Jennifer Ironside recently scaled Ben Nevis, the
highest mountain in Scotland with her partner, some
friends and her dog, Nev, to raise awareness of
Vasculitis. Thank you for your donation of £340.
Shauna Morgan completed the Flora Women’s Mini
Marathon, a 10k race held annually in Dublin. Shauna
was diagnosed with WG in 2013 and we are grateful
for the donation of over 700 € .
Adam Perna of Twyford, Bucks entered the
Silverstone Half Marathon in March 2014 to raise
funds via Andy Bone's "SportsShots" for Vasculitis UK
and for Macmillan. Adam raised over £1000 and just
over £500 was donated to VUK.
Claire Greenhow-Phillips of Tweeties Traders raised
£573.74 with her fundraising stall event during
Vasculitis Awareness Month.
When Charlie Ponder, a 26 year old Drama and
English teacher from North-Norfolk was diagnosed
GPA on Valentine's day 2012, he set himself a
number of challenges, including running a marathon...
well this year he exceeded that by completing 3 and a
bit marathons in four days, running around the Norfolk
coastline. Congratulations, Charlie and thank you for
raising £2051 for VUK.
Isabel Rodriguez and mum Carol walked the route of
the Camino Ingles (English Route) which is a
pilgrimage route from Ferrol to Santiago de
Compostela (the Shrine of St James) 120K in
Northern Spain and raised £376 in memory of Isabel’s
father Gonzalo Rodriguez Revoltos..
We are grateful for a donation of £200 from the Rotary
Club of Wilton, and £50 from IPM Global Management
of Peterborough.
In June Irene Segerberg took part in the spectacular
but cold, Great North Swim in Windermere. The event
was in memory of Nicola Sanders who passed away
at the age of 37 having been diagnosed with
Wegener's at the age of 17. Irene raised £305.
Susan Smith held a fundraising garden party for
Vasculitis UK on 18th May. Family and friends helped
to make cakes and run stalls and £525 was raised.
Looks like it was great fun, Susan!
Richard Kinsey successfully completed the Bristol
10km 2014 in May. Richard has Polyarteritis Nodosa,
and raised £221 towards vasculitis research.
T15 Cricket -- To stump out Vasculitis! Juhi Mahajan,
who has vasculitis, organized a charity cricket match
in aid of vasculitis. Everyone had a fun day and £500
was raised. Thank you, Juhi.
Martin Makin has been a regular distance runner for
many years, and was determined that cyclo treatment
for GPA would not stop him competing in this year’s
Continued on page 20
19
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Thanks to our wonderful fundraisers - continued
Georgia Upjohn, Kathleen McGee, Chloe Hopwood
and Ben (Georgia’s brother) completed a 1000 mile
cycle ride from Lands End to John O’Groats. This was
a fantastic achievement for the whole team, but
especially for Ben who is 18 and was diagnosed with
Polyarthritis Nodosa just over 12 months ago.
Between them the team raised over a staggering
£4,000.
Charlotte Stoner and friends from the south West
VSG, held a bric-a-brac sale during Vasculitis
Awareness month, raising £163 – a princely sum in
view it being held on a very wet and cold Bank
holiday.
Team Fred made it a family affair when they entered
the South Coast Run 2014 in memory of Fred Sterling.
Sally led the 10k runners all the way and was third
overall for over 60s. Peter led the half marathon team.
Well done to the whole team and all their supporters,
who raised £2,925 for Vasculitis UK!
Another of our annual fundraising events is the Annual
Thames Riverside Walk. This may not be the longest
trek in the fundraising calendar, but to many of its
participants, walking for six miles across the bridges of
London represents a major physical achievement.
Congratulations to Helen Davies who completed the
walk this year and raised £40. Also, to Vasculitis UK
regulars the Hart family and friends, who raised £638,
Sarah Ilott, who raised £30, and event organizer
Jacqui Moran (£165). Additionally Shenfield High
School, Essex made a donation of £100 towards the
event from a Bake Sale held at the school.
A team with a fascination for mud and water are Kelly
Wright’s amazing friends and family who completed
“The Rat Race Dirty Weekend” to raise money for
VUK. Kelly’s mother Lorna, was an international
Taekwon-do competitor and teacher, and the team
undertook their challenge to remember this lovely
lady, and raise £1,800 as well.
Jessica Watson has been busy fundraising for VUK,
On 15 April she organized a disco for her friends at
Killingworth Social Club in North Tyneside, raising
£500. This was followed by a bag pack at her local
Morrisons Store raising over £300. Jessica is 13 and
was diagnosed with Central Nervous System
Vasculitis three years ago. She is thought to be the
youngest person in the
UK with CNS. Thank you
Jessica.
Unfortunately, there is insufficient space in the Newsletter to show all the photos we have of our fab-u-lous
fundraisers, but they are available to view on the Vasculitis UK website. So why not visit, the Fundraisers Photo
Gallery and maybe get some inspiration? www.vasculitis.org.uk/about/fundraisers-photo-gallery
TRAVEL INSURANCE
Vasculitis UK can provide you with information
to help when claiming government benefits.
If you are claiming or appealing about benefits
then
contact:
Jann
Landles
[email protected]
Vasculitis UK have a comprehensive list of
companies who provide travel insurance for
patients with pre-existing conditions.
Details are available on the V-UK website:
www.vasculitis.org.uk/living-with-vasculitis/
insurance or contact John or Susan Mills details on page 28
We’re on-line! Did you know ….. ?
We have over 1000 Likes on our Facebook page. Nearly 1500 members in the
Facebook Support group, 1842 members in the Health Unlocked Community, and over
1300 followers on Twitter?
20
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Meeting the Professionals
As I’m sure everyone reading this will know, early diagnosis
is key to successful treatment of vasculitis, and so
Vasculitis UK is constantly searching for new ways to raise
awareness among medical professionals of all the
conditions in the spectrum. This year we focussed on
medical specialists working in Rheumatology and Renal
medicine, by attending their two main professional
conferences as exhibitors. For both conferences, we set
out two themes:
by Professor Mark Little. He updated his audience on the
progress of the vasculitis registry, a development that
Vasculitis UK has helped to sponsor.
1) To demonstrate how patients and professionals by
working together in partnership can improve care for
vasculitis patients. We produced a poster with a
corresponding leaflet to re-enforce this theme.
2) Our second theme was to stress the importance of early
recognition and diagnosis and the serious consequences of
delayed diagnosis. For this there was also an attentiongrabbing poster with a corresponding leaflet showing the
symptoms commonly associated with vasculitis.
As luck would have it, both conferences took place in the
same week at different venues, Liverpool and Glasgow, so
we needed two stands and two teams to man them. Here’s
how we got on:
British Kidney Week 2014, Glasgow
Our arrival in Glasgow for Kidney Week 2014 was greeted
by brilliant sunshine, and our hopes were high for this new
venture in raising vasculitis awareness among medical
professionals. Kidney Week was held from Tuesday 29 April
to Friday 2 May at the SECC. This conference centre is
located on the banks of the Clyde in an area that was once
the industrial hub of the of the shipbuilding industry. A
lone crane still stood silhouetted against the blue sky; a
reminder of the past.
Kidney Week is the annual conference for nephrologists
and is hosted jointly by the British Renal Society and the
Renal Association. Around 1,100 delegates - including
surgeons, doctors, nurses, social workers, and pharmacists
attended the four-day conference, the biggest multidisciplinary event of its kind.
While none of the lectures were on Vasculitis, we were
delighted to see several of the papers presented by
doctors during the course of the conference were related
to research into or on related vasculitis issues. A paper
(abstract) on the observation from the long-term follow-up
of several trials was delivered by Dr Matthew Morgan can
still be seen on the Renal Association website. Many of you
will know of Dr Matthew Morgan, as he worked with
Trustee Pat Fearnside as one of the initial authors of the
Vasculitis UK Route Map.
There were also five other papers given on Vasculitis
research from places like Birmingham University Hospitals
and Imperial College London. Richard and I were
particularly excited by the last of these papers presented
On our stand we were kept busy talking to both
consultants and specialist renal nurses. A large number of
them expressed surprise that there was a Vasculitis charity,
and were keen to learn more about the support services
their patients can receive through us. All visitors approved
of the information we provided on the Vasculitis
conditions, and a number signed up for our newsletters
At the stand we also saw many familiar faces, including
Consultants who have over the years supported Vasculitis
UK. Attendance at this conference has put in touch with
new medical professionals who want to receive
information on Vasculitis, and also taught us how we can
be even more effective at future events.
A lot of preparation goes into attending an event like
Kidney Week and the Rheumatology Conference. I would
thank my fellow trustees for putting in the effort to make
the event a success: John Mills for suggesting the theme,
Danni Brunwin for her design input and Pat Fearnside for
reformatting the Vasculitis Route Map into a size suitable
for conferences.
BSR Conference, Liverpool
On the 28th April 2014 I started my long journey to a city I
had never ventured to before. All I knew about it was that
it had reputation for football, the Titanic and hair rollers.
My destination was, of course, Liverpool. When I arrived I
was taken aback by the beautifully revitalized Liverpool
Docks, which is where the conference centre is. Sadly, it
was too foggy all week to take a ferry across the Mersey.
The British Society of Rheumatologists conference took
place over three days and more than 2,000 people
attended. Mike Patnick and I were the core team with John
and Susan joining us at the beginning.
Continued on page 22:
21
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Meeting the Professionals continued
We shared our allocated stand space with Polymyalgia
Rheumatica & Giant Cell Arteritis UK and we were glad of
the company as it was very quiet when the doctors were in
sessions. It was PRMGCAUK’s first conference as well, so we
learnt the ropes together, mainly taking advantage of the
snack tables.
PowerPoint's. We were also really well located so we were
able to attract passing delegates. It was great to see familiar
faces that work with our charity and to connect with new
ones. We had a lot of interest from Rheumatology nurses
which is fantastic as they often give practical advice and
support to patients and they really liked our new smaller
information booklets
Attending this conference was the Launch-pad for forming
new relationships with a range of medical practitioners and
it was particularly rewarding to receive thanks from a
number of doctors who we had not previously met, but
who knew how we had helped some of their patients over
the years.
Social media played a large part of the conference
so we used that to our advantage. One of our
tweets was featured in the conference report,
selected from the 1,365 tweets sent by attendees!
Throughout the conference there were several talks and
sessions about aspects of Vasculitis, most notably Richard
Watts’ keynote lecture which featured a clinical overview of
Vasculitis, starting from the earliest cases, right up to the
present day. In addition, there was a session called
“Vasculitis – meet the experts” with Prof Raashid Luqmani
and Prof David Jayne. The topics were pre-selected by
trainees following a survey, which means that young
doctors are wanting to learn more about Vasculitis. Yay!
I was really interested by a number of relevant poster
presentations especially one on the “RUDY” study. It was
particularly interesting as Prof Rashid Luqmani was
promoting the value of the information gathered to the
medical professionals present, whereas previously he had
been taking a patient perspective.
Vasculitis UK received great coverage in the sessions as our
logo was shamelessly featured in certain doctors’
This conference was our new Trustee; Mike Patnick’s first
outing wearing a Vasculitis UK badge. Mike had previously
worked for Arthritis UK and he spent many hours
networking and promoting Vasculitis UK to his existing
contacts. We are very grateful for your hard work, Mike,
and I appreciate you keeping me sane through the long
working day.
Unfortunately I didn't get to see much of Liverpool whilst I
was there but I did help Vasculitis UK make some great new
contacts and I am looking forward to helping maintain and
develop these relationships in the coming years.
Report by: Jann Landles (Glasgow) and Danni Brunwin
(Liverpool)
Vasculitis UK Vice Chair - Richard Eastoe
The charity is sorry to announce that Richard Eastoe resigned as Vice
Chair in the Spring. His resignation was a great loss to the charity
although he will remain an active member of V-UK. His ability to see
things clearly and to act as an arbiter (often necessary) are very much
missed.
Richard was well known to many of the medical professionals and he was a
great ambassador for the charity. His knowledge of vasculitis will also be
missed, but he is still regularly helping vasculitis patients on the Facebook and HealthUnlocked
sites and giving a helping hand to Lynne and Jennifer at their Support Group meetings.
We wish Richard and his partner Suze our very best wishes for their future.
22
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Postgraduate Education Afternoon - Imperial Vasculitis Centre
There was some interesting discussion amongst the
doctors about whether maintenance therapy should
be reduced earlier because the outcomes of relapses
had been shown to be no different. The thought was
that patients could then be spared at least some toxic
drug treatment.
After the break came two case studies.
On 5th March Richard Eastoe, together with John
and Susan Mills attended the second Vasculitis
education session organised by Professor Justin
Mason at the Imperial Vasculitis Centre at
Hammersmith Hospital in London.
Professor Charles Pusey started the afternoon
describing how they were working to build a
multidisciplinary team to treat people with vasculitis at
Hammersmith. They currently have an impressive list
of ENT, Ophthalmology, Rheumatology, Renal,
Cerebral and Respiratory specialists all working
together to diagnose and treat vasculitis patients.
The first presentation was entitled “The Eye in the
Systematic Vasculitides” by Professor Susan
Lightman from Moorfields Eye Hospital.
Professor Lightman talked about the various eye
problems that can occur in autoimmune diseases
such as Behçet’s, Lupus and GPA (Wegener’s). She
outlined some of the current studies and biologic
treatments using Infliximab and Rituximab.
The next presentation was by Professor Ann Morgan
from St James’s hospital in Leeds entitled “The Role
of Genetic Predisposition in GCA”.
The first was a complicated case of a stroke patient
with sinus and eye problems who was eventually
diagnosed with GPA and Cerebral vasculitis. The
conclusion was that stroke in ANCA associated
vasculitis is poorly understood but that early
intervention improves the outcome for such patients.
The second study was a case of a patient with
urticarial vasculitis and heart valve disease. The
patient was eventually diagnosed with
Hypocomplementemic Urticarial Vasculitis Syndrome
(HUVS), this was despite not showing the typical antiC1Q autoantibodies that are normally found with the
disease.
To date, the staff at Imperial have only found 5 other
similar cases of HUVS worldwide. The cases raise
the question as to whether similar antibodies can be
found both in cases of HUVS and valvular heart
disease.
This was another impressive meeting showing the
level of interest there is in the research and treatment
of vasculitis. I was particularly pleased to see, again,
the interest not only in ANCA vasculitis but also in
some of the more rare forms of the disease such as
CNSV and HUVS.
Professor Morgan talked about the UK GCA
Consortium. This is a multi-centre study to establish
the causes, development and clinical presentation of
GCA & PMR. It also hopes to identify biomarkers for
the diagnosis and monitoring of the disease.
During the Q&A session there was a lot of discussion
and sharing of experience around the use of
ultrasound in order to get the best possible sample
from temporal biopsies.
Finally Dr Ruth Tarzi from Imperial gave a
presentation on “Clinical Trials in ANCA and Large
Vessel Vasculitis”.
Dr Tarzi discussed many trials comparing the
effectiveness and outcomes of different drug
treatments and therapies. She concluded that there
were still unmet needs for reducing the toxicity of
treatments and for predicting the risk of relapses.
Prof Justin Mason
Prof Charles Pusey
Richard Eastoe
23
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Provisional Notice - Vasculitis Patient Symposium
Saturday 18th April 2015
The
prestigious
17 th
International
Vasculitis and ANCA Workshop will be held
in
London
from
Sunday
19th
to
Wednesday 22nd April 2015. International
experts in the field of vasculitis will be
attending the Workshop.
On Saturday 18th April, prior to the main
Workshop, Vasculitis UK, in conjunction
with several other vasculitis patient
organisations, will be hosting the first
UK National
Vasculitis Patient
Symposium.
Negotiations are currently taking place to
attract some of the top international
experts in the field of vasculitis to speak
at this event. The format will be a mix of
short
presentations
and
discussion
sessions with panels of experts.
Provisional topics being considered for
presentations and discussion are:

Fatigue, Neuropathy and Pain
Management

New developments in treatment,
therapy and diagnostics

New directions in research

Developments in Genetic Research

Large vessel vasculitis (Giant Cell
Arteritis and Takayasu)

Long term management of ANCA
vasculitis

NHS changes - the effects on vasculitis
care

Vasculitis in children

Living with long term effects of
vasculitis

The team approach to vasculitis care:
patients & professionals together

Vasculitis: the influence of Lifestyle
and Complementary Therapies

Vasculitis: what is it, what causes it
and where does it come from?
The
Patient
Symposium will be
held at the Business
Design Centre, 52
Upper
Street,
London, N1 0QH
The cost is likely to
be around £60 per delegate pass. This includes
a full lunch and all coffee breaks.
Further details will be available shortly on the
Vasculitis UK website: www.vasculitis.org.uk.
Meanwhile please make a note of the date of the
Vasculitis Patient Symposium - Saturday 18th
April 2015.
To pre-register an interest, contact
[email protected] or phone 01629650549.
It’s Official - being a pushy patient is good for you
Professor David Haslam, Chairman of
the National Institute of Health and
Care Excellence (NICE) said on 2
October 2014 that NHS patients
should adopt American attitudes and
become more assertive to ensure
they get the treatment they need.
24
In an interview with the Daily
Telegraph he said that too many
patients were not being offered
medications already approved by
NICE and that they should become
more knowledgeable about their
conditions and ask for dugs which
should be prescribed for them.
Professor Haslam, a former GP, said
“The fundamental point is that it’s
your body - and the more you
understand about the drugs you are
taking, or what you might be able to
have, the better you are able to work
with your doctor.
Vasculitis UK - Autumn/Wionter 2014
www.vasculitis.org.uk
In Memoriam
Vasculitis UK often receives donations from bequests and funeral collections in memory of particular individuals
who have suffered from vasculitis, or where vasculitis affects a family member. Our sympathies are extended to
the families and friends of those mentioned below.
The Trust is extremely grateful for families remembering us in this kind and generous manner,. All donations
received will be used to fund the activities of the Trust, especially our research projects
Beatrice C. Adkins of Solihull passed away on 13th
June 2014 aged 93. Beatrice came from a large
family, and was much loved by her family and friends
who have donated £194. From 1964 onwards she
helped her husband to run City Butchers in
Birmingham, she was an active member of Shirley
Methodist Church and had many hobbies. She was
diagnosed with vasculitis in 2012 and was brave and
courageous throughout – she was known as 'Wonder
Woman' by the renal team.
Christine Beck of Stanford in the Vale, Oxon has
passed away aged 67. She developed vasculitis in
August 2013 and died of the complications of her
treatment. She enjoyed her rural life and her cheerful
manner is much missed by her friends who have
donated £101.to Vasculitis UK.
Ellen Bettaney We are grateful for a donation from
the Features department at The Times newspaper
who have sent a donation of £300 in memory of Elle
Bettaney who died recently.
Grace Brumpton recently passed away aged 103 in
Market Rasen. Lincolnshire. Her family have kindly
made a donation of £200 for vasculitis research,
Grace's grandson, James Clark, is a member of
Vasculitis UK.
Jean Cheek of Castle Carey, Somerset passed away
in April after a short illness. She is remembered with
love by her husband, David, and sister Janet. The
Trust is grateful for their donation of over £600.
Kenneth Child of Buckinghamshire. The Trust is
grateful for an anonymous donation of £265 received
in his memory.
Valerie Culham of Ipswich. We are grateful for
donations totalling £285 in memory of Valerie.
Helen Mary Davies a much loved mother who had
battled many illnesses including vasculitis, passed
away in April 2014. Her family and friends in Norfolk
have donated £529.in her memory.
Neville Davies Neville, a member of Vasculitis UK,
was a patient of Prof. Caroline Savage of
Birmingham in 2000. He was a most determined
man. He lived a further 14 years after Caroline
Savage's timely intervention. Donations of £356 from
family and friends are gratefully acknowledged.
Barbara Evans died peacefully in hospital on 19
February 2014, from complications of vasculitis. She
is much missed by her husband Roy and wider
family, who have donated £269 in her memory.
Dorothy Fagan The Trust is grateful for a donation of
£95.
Robert Fleming Bob was 94 when he passed away
in June 2014. He played golf until he was 86, and
only slowed down five years ago when he developed
vasculitis. He is fondly remembered by his daughter
Liz Rixon and we are grateful for a donation of £80.
Ronald John Hughes We are very grateful to receive
a donation of £100 in memory of Ron, from his
widow, Janet. Ron had GPA (diagnosed in 2010) and
he passed away in May 2011.
Alfred Hurworth The Trustees are very grateful for a
bequest of £20,000 received from the estate of the
late Mr. Hurworth of Carnforth, Lancashire. Alf had
vasculitis and was a long-standing member of
Vasculitis UK.
Bert Johnson of Aylesbury, Bucks is remembered by
his wife, Shirley, and family and friends with a
donation to VUK of £50. Bert served in the Royal
Signals and was a keen cyclist, even making his own
bikes. Donations have been shared between
Vasculitis UK and the Florence Nightingale Hospice.
Pamela Maitland of Mirfield, West Yorkshire passed
away on 8 June. She was diagnosed with CSS in
2002, but her health deteriorated over the past 18
months. Pamela was 64 when she died. She was a
lovely, caring and strong lady. She leaves behind
her adoring husband Malcolm. She also leaves 2
daughters and 3 sons from her previous marriage.
We are grateful for a donation of £136.from her
family and friends.
Jacky Matthews of Culcheth, Warrington passed
away in Jan 2014. Jacky had vasculitis and had been
ill for several years. Both Jacky and her husband Bob
were members of Vasculitis UK. Jacky leaves her
husband and three sons. Thank you for your
donation of £265.
John Francis May died on 22 June 2014. John lived
in Southport and the Trust is very grateful for
donations totalling £1766.received in his memory.
IContinued.on page 26:
25
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
In Memoriam continued
Vera Lilian Milne of Bristol passed away on 3 August
2014 aged 89. Vera was described by family as a
lovely person who never complained, we are grateful
for donations received in her memory totalling £306..
diagnosed with GPA six months previously. She was
born in Derry, Northern Ireland and loved everything
Irish, particularly the music and rugby. We are most
grateful for the £350 donation sent by her family.
Sheila Violet Munns Sheila was a member of
Vasculitis UK (Cambridge group) and is sadly missed
by her family and friends who have raised £623 in
her memory. Her daughter, Carol Keys, tells us that
she was devoted to her family, and didn’t let her
illness stop her from going out and enjoying herself.
Fred Sterling continues to be remembered by his
family and friends: Margaret Neech, Fred’s mother-inlaw has sent £75 in memory of her very special sonin-law. “Team Fred” have also been fundraising for
Vasculitis UK.
Ronald Andrew Noble Peter Noble, an active
member of Vasculitis UK, has made a donation of
£50 in memory of his father, who passed away in
September 2014.
Kirit Patel (KP) The Trust is grateful to the Family and
friends of Kirit who have donated over £940 in his
memory to assist the research into the syndrome that
took Kirit far too early. Kirit had Churg Strauss
Syndrome and passed away in July 2014.
Urmila Patel We are grateful for donations totalling
£1046, kindly donated by family and friends in
memory of this much loved mother and grandmother
who passed away prematurely from complications of
vasculitis.
Jacqueline Robbins of Frinton Essex passed away in
April 2014. Jacqueline was a member of the Frinton
Community Singers who kindly donated £64.
Nicola Sanders Thanks to Kathy Sanders who made
a donation in memory of her daughter Nicola
Sanders. Of £300. Nicola died 4 years ago aged 37.
She was diagnosed with vasculitis aged 17, and died
following complications of breast cancer.
Philip Nigel Sidebottom of Huddersfield, a vasculitis
patient, passed away in April and his family and
friends have kindly donated £536 in his memory.
Irene Spendlowe Our thanks go to the family and
friends of Irene Spendlowe of Christchurch, Dorset
who have donated £250 in her memory.
Geoffrey Taylor of Farnborough, died on 20 February
2014. Geoffrey suffered from vasculitis for many
years along with other illnesses, but throughout that
time he battled on bravely. Geoffrey used to enjoy
spending time with family and he had a number of
hobbies. We are grateful for donations of £345 from
family and friends in his memory.
Margaret Thompson of Mansfield Woodhouse.
Margaret suffered with vasculitis and fibromyalgia for
several years, losing her battle on 27 January 2014
at the age of 80. She leaves a loving husband Barry
and is remembered with affection as a very talented
lady who inspired those she met. Her family and
friends have donated £299 in her memory.
Kenneth Townsend of Preston, Lancs, passed away
on 4tJuly 2014 aged 78. Ken’s wife Margaret, who
had vasculitis, died earlier this year, and their family
have made donations and organised a fundraising
bike ride in their memory. We are grateful for a
donation of £225.
Elsie Wilson Elsie was diagnosed in June 2013, but
lost her fight with vasculitis on 19 May 2014. She was
a very active lady, who attended various clubs and
went dancing regularly with her husband. We are
grateful for a donation of £30 from Elsie’s art club.
Vasculitis UK would also like to acknowledge the
numerous and often anonymous donations received
from our supporters which wee made via
JustGiving.com. We grateful for all gifts, large and
small, and use these donations exclusively to fund
our work in supporting patients, raising awareness
and funding research into Vasculitis.
Edith Sproats of Lincoln was 78 years old when she
passed away in February 2014, having been
JustGiving/Remember
The charity has a simple and sensitive JustGiving page for those who may wish to raise funds for
Vasculitis UK by celebrating the life of a loved one.
If you would like to remember a loved one in this way to help raise funds for the charity please visit:
www.justgiving.com/VasculitisUK/Remember
Bequests
If you would like to consider leaving a bequest to Vasculitis UK, please contact our Treasurer.,
Patricia Fearnside, 01709 5983722 or [email protected]
26
Vasculitis UK - Autumn/Winter 2014
www.vasculitis.org.uk
Find a Support Group in your area
Below you will find the contact details for Vasculitis Support
Groups in England, Wales and Ireland. In addition there are
details for contact persons in the UK and the Republic of
Ireland who do not run actual Group meetings.
The supporters who do not run an actual group are marked * *
Beds, Bucks & Herts
Merseyside, Cheshire and N. Wales
Janine Davies 01525 372733
[email protected]
Christine Lee
01480 869162
[email protected]
Susan Chance
01244 381680
[email protected]
Dave Birch
0151 7229049 or 07968226230
[email protected]
Cambridge
Lesley Noblett 0776 5897780
[email protected]
Canterbury area **
North Wales **
Pat Vernalls
01766 770546
[email protected]
Margaret McGrath
01227 638 469
[email protected]
North West (Cumbria) **
East Kent **
Oxfordshire
Brian Hart
01227 369774
East Midlands
Dorothy Ireland
01332 601303
[email protected]
Lisa Ranyell 01664 857532
[email protected]
Susan Mills
01629 650549
[email protected]
Edinburgh, Lothian & Central **
Jimmy Walker 07725 770103
[email protected]
Jules Darlow
07789 113144
[email protected]
Patricia Henderson
Sue Ashdown
01295 816841
[email protected]
Portsmouth
Julie Ingall [email protected]
Republic of Ireland **
Joe O’Dowd
00353 (086) 2345705
[email protected]
South Wales
Jenny Fulford Brown
02920 218795 [email protected]
Surrey **
Essex
Glasgow **
Martin Thomas
07765 888987 [email protected]
0141 581 1711
Ireland — Vasculitis Awareness Ireland
Julie Power
028 44 482889
[email protected]
Lancashire/North West
Jann Landles
07979 180145
Anita Parekh
07921 682232
[email protected]
Jim Lee 01342 833321 or 07876 561075
[email protected]
West Country
Charlotte Stoner
01626 872420 [email protected]
West Midlands (VSGWM)
David Sambrook
[email protected]
West Sussex **
John Bailey
07752 122926
[email protected]
York, North & East Riding
Lincolnshire
Jennifer Wormald
[email protected]
Pam Todd 01526 268106
[email protected]
Yorkshire - West
London — North London
Lynne Jacques 01274 412378
[email protected]
Dave Newman 0742 913 7670
[email protected]
Yorkshire - South **
London - SE London/NW Kent
Pat Fearnside
01709 583722
[email protected]
Jacqui Moran
07792 412768
[email protected]
The Ring A support group in Norfolk for RA patients.
Judith Virgo
[email protected]
27
LIFE PRESIDENT - LILLIAN STRANGE
Vasculitis UK is the UK’s Np. 1 Vasculitis charity, established in 1992. We are an
independent organisation funded entirely by voluntary contributions from members
and supporters
The main aims of the Trust are:

To offer support and advice for those with vasculitis, and their families

To support and promote research into the causes and treatments of vasculitis

To increase awareness of vasculitic diseases among both the general public and
health professionals

To support the development of local vasculitis support groups
Established in 1992 by the family and friends of Stuart Strange, in his memory. Formerly
known as Stuart Strange Vasculitis Trust.
Registered Charity No. 1019983
Officers, Trustees
and Volunteers
Chairm an:
John Mills
[email protected]
Trust ees:
Danni Brunwin
CONTACT US
Hon Secretary:
Jann Landles
[email protected]
Jane Elsom
Helpline:
0300 365 0075
Treasurer:
Patricia Fearnside
[email protected]
Volunteers:
Veronica Brunwin
(Young Vasculitis UK)
Dorothy Ireland
(Fundraising Coordinator)
Susan Mills
Jacqui Moran
Mike Patnick
Lisa Ranyell
(Newsletter Editor)
(Assistant Treasurer)
Medical Advisors:
Dr David Jayne
Lucy Riveiros
Prof David G.I. Scott
Anita Parekh
(Shop Manager)
Website:
www.vasculitis.org.uk
Address:
West Bank House
Winster
Matlock
DE4 2DQ
Phone:
01629 650549
Dr Richard Watts
Julie Scott
(Assistant Fundraising Coordinator)
Published by: Vasculitis UK
Printed by: Whittington Moor Printing Works Ltd Stonegravels Lane, off Sheffield Road, Chesterfield, S41 7LF
01246 221892 [email protected]