Royal National Hospital for Rheumatic Diseases in Bath

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hot news
Issue No. 107
Royal National Hospital for
Rheumatic Diseases in Bath
Volume 1 2009
In this issue...
The Lungs and Scleroderma
Page 5
Pictured above back row standing from left to right: Dr Zoe Betteridge, Post Doctoral Research Fellow, Dr John
Pauling, Specialist Registrar in Rheumatology, Sister Sue Brown, Clinical Nurse Specialist in Connective Tissue
Diseases and Professor Neil McHugh, Consultant Rheumatologist. Front row seated from left to right: Dr Harsha
Writing Competition Winner
Gunawardena, Honorary Consultant Rheumatologist, Dr Jay Sunrathalingham, Consultant Pulmonary Physician
Page 8
RUH and Dr Chris Lovell, Consultant Dermatologist RUH.
The Royal National Hospital for Rheumatic Diseases in Bath (RNHRD) has been supporting
patients with Raynaud's and scleroderma in the Connective Tissue Disease (CTD) service for
many years. Led by Professor Neil McHugh, Dr Ellie Korendowych and Sister Sue Brown, we
provide not only a clinical and educational service, but also a comprehensive research
programme that includes acting as a European centre for autoantibody testing, undertaking
collaborative genetic studies in scleroderma and participating in multicentre trials of new forms
of treatment. Sister Sue Brown has been a leading figure in support for patients, and works
closely with national colleagues and the RSA. Sue has been very generously financially
supported by the RSA over the last 9 years.
Continued on page 4
My hands turned white
Page 9
BBC Breakfast TV
Raises Awareness
On 5th January, Dr Rosemary Leonard showed some of the
heating aids and garments available from the RSA and
helped to raise awareness of Raynaud’s on BBC Breakfast
TV programme. This publicity resulted in the Association
receiving literally hundreds of enquiries from interested
viewers, many of whom have since become members.
Fundraising
Page 10
Raynaud’s Awareness Month - February 2009
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Welcome
Dear Readers,
Welcome to the 1st edition of Hot News 2009. What a cold start to the New Year. I am sure
all our members were affected by the severe cold weather. It is probably the only time of year
when other people can understand what we go through on a regular basis. Make sure you
stock up on heating aids as there is still a long way to go before we put away our winter
woolies and look forward to some warmer weather!
Anne H Mawdsley MBE
Another milestone reached
RSA Meeting
I am delighted to tell you that by the end of
December, the total raised by the RSA in 26
years had reached over 10 million pounds.
The majority of this money has been used
to fund research into Raynaud’s and
scleroderma in addition to welfare projects.
Well done and thank you to everyone who
has been instrumental in supporting us over
this time. It shows that every little helps and
no matter how large or small a donation, it all
adds up.
A meeting chaired by Professor Dame Carol
Black was held in London in December. The
aim of the meeting was to bring together all
the expert clinicians and scientists who the
RSA have been funding over the years and
to discuss where we are today and what the
priorities are for the future. This meeting was
well attended and gave the trustees
information which will be most helpful when
considering grant applications in the future.
Credit crunch
Thanks to everyone who has been collecting
loose change in their Percy boxes. This has
amounted to the grand sum of £25,700. We
have recently ordered a new batch of Percy
boxes so if yours has worn out just let us
know and we will send you a new one. Keep
collecting!
This is the most talked about topic at the
moment. I think all charities are going to feel
the effects of today’s economic climate. All
we can do is find different ways of raising
money. It is all too easy to sit back and say
we are having a bad time but the only way
forward is to think positive and and keep
trying. We are very aware that many of our
members will be having difficulty with high
heating bills this winter and hope that some
of our reasonably priced heating aids will be
of help. Don’t forget the cheapest
handwarmer - a jacket potato put in the
microwave for a few minutes, then wrapped
in tinfoil can stay warm for hours!
Percy boxes
Anne H Mawdsley MBE
PRESIDENT
Prof. Dame Carol Black DBE
TRUSTEES
Barry Hicks, Joanna Kaddish
Kevin Lafferty, Jeremy Pearson
Freezing cold!
Sponsor for newsletter
For the past 26 years many companies have
generously supported the costs of
producing our quarterly newsletters. We are
now looking for new sponsors so if you work
for or know of any company who could help,
even by sponsoring just one issue, we would
be most grateful. If you would like further
information i.e. costings etc., please let us
Bio-Biloba Pilot Study
know by emailing [email protected] or
Thank you to the members with Primary call 01270 872776.
Raynaud’s who took part in the Bio-Biloba
Publicity
pilot study. The results showed that 71% of
The Association had a busy time in the run
those who took part, found that the ginkgo up to Christmas with renewals etc. A sincere
biloba product helped their Raynaud’s. For thank you for all the Christmas cards and
details of how to order the supplement see donations which we received. However,
page 11.
January wasn’t just busy - it was manic! It all
started with a piece in the Daily Mail on New
CHIEF EXECUTIVE
& FOUNDER
Year’s Day and a few days later Dr Rosemary
Leonard gave us a plug on BBC Breakfast
and then a piece in the Daily Express
promoted our heating aids. This resulted in
hundreds of letters, orders, e-mails and
phone calls every day. It was probably the
highest volume of enquiries and orders we
have ever received.
Thank you to everyone for your patience if
your orders were slower than usual in
getting to you. The staff were so busy there
was hardly time to come up for breath!
A special thanks to Jiffy Packaging who very
kindly supplied us with Jiffy bags free of
charge to help with all the parcels.
This cartoon was spotted in the Express!
With many thanks to everyone for their
support - we are going to need you in the
days to come and we are here if you need
us!
Anne
PATRONS
MEDICAL ADVISORS
William Bromley-Davenport
Prof. J Belch; Sister S Brown
Sharron Davies MBE
Prof. C Denton; Dr. A L Herrick
Roger Jefcoate CBE
Dr. C Lovell; Dr. R Macdonald
Veronica, Lady Piercy
Prof. P Maddison; Prof. R Moots
Nick Ross
Prof. D Scott; Prof. A Silman
David Wilkie MBE
Dr. D Veale
HEAD OFFICE: 112 Crewe Road, Alsager, Cheshire ST7 2JA
Tel: 01270 872776 Fax: 01270 883556 Email: [email protected] Website: www.raynauds.org.uk Charity Reg. No. 326306
DISCLAIMER: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products.
Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.
02
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Doc Spot
Your Questions Answered
Professor Chris Denton
FRCP
Consultant Rheumatologist, Royal Free Hospital
I was diagnosed with Raynaud’s a couple of years ago and have managed quite
well. However, recently I have had to have my wedding ring cut off as my fingers
have started to swell. Why is this?
Swelling of the fingers can occur in Raynaud's due to an increase in fluid content
of the skin that occurs when blood vessels become leaky. This can occur in the red
phase of a Raynaud's attack and is common even in primary Raynaud's. However,
if the fingers are persistently swollen this may suggest the development of
scleroderma, arthritis or another form of connective tissue disease and you should
discuss that with your doctor.
I have been prescribed beta blockers for heart problems but they appear to have
made the Raynaud’s in my hands worse. Could this be the reason and if so, why?
Although beta blocker drugs can be very helpful for a number of common medical
conditions including high blood pressure, heart disease and migraine by blocking
nerves that stress the heart or blood vessels, they can worsen Raynaud's because
they also affect some of the nerve fibres that actively dilate some blood vessels in
the extremities. You should discuss this with your doctor as there may be alternative
treatments. Not all beta blockers are the same, and there are newer more selective
beta blockers that may not have such a marked effect.
Does scleroderma cause muscle weakness for example, in the ankles?
Scleroderma often causes some degree of muscle wasting although weakness is
uncommon. Approximately one fifth of patients with scleroderma have some
evidence of another rheumatic disease. This is termed an overlap syndrome and
some of these have myositis which causes severe muscle weakness but may be
treated with medication including steroids and immunosuppressive drugs such as
azathioprine, methotrexate and others.
Three years ago I was tested for scleroderma as a doctor felt sure I could be
suffering from a mild form of the disease. Thankfully the blood test was negative.
Now three years later I asked if it could now be present (I am 83 and have had
Raynaud's for as long as I can remember). I have been told both by my consultant
and GP that as the test done three years ago was negative, I will not get scleroderma
ever - is this correct?
The commonest age for onset of scleroderma is between 45 and 60 and new
cases developing after the age of 65 are very rare. In addition, when Raynaud's
does progress to scleroderma this occurs within 10 to 15 years. It is therefore
very unlikely that scleroderma will ever develop. With regards to blood tests, it is
possible for them to change from negative to positive, but unless there are other
features of scleroderma or worsening Raynaud's then repeating the tests is not
really necessary, as it would be of little significance.
I have pulmonary hypertension. Do I need to alter my diet?
There is no evidence that any particular diet influences pulmonary hypertension,
which occurs when blood vessels become narrowed in the lungs and can affect
patients with scleroderma. If this complication is diagnosed you should be seen
and treated in a specialist centre as there are several new and effective treatments
available. There has been interest in whether food rich in a substance called
arginine may help pulmonary hypertension (by stimulating the body to produce a
chemical called nitric oxide) but very large amounts would have to be consumed
and formal trials have not been positive, so no specific diet is recommended.
I have Raynaud’s in my hands and feet. Recently I
have noticed that when I get really cold my right
nipple goes white then blue/purple and painful. Could
this be connected with Raynaud’s?
You are describing Raynaud's of the nipple.
Raynaud's phenomenon can affect any part of the
skin in which the blood vessels respond to changes
in temperature. This troublesome symptom may
benefit from the general therapies for Raynaud's
including antioxidant vitamin supplements, fish oils
or ginkgo biloba, as well as prescription vasodilator
drugs from your doctor. Sometimes local application
of a nitrate ointment around the nipple can be
helpful.
I have Raynaud's and limited scleroderma and
wonder if these are contributory to the rapid tooth
deterioration which I experienced with the onset of
scleroderma being diagnosed.
Many patients with scleroderma develop dryness of
the mouth due to involvement of the salivary glands
and changes in the lining skin of the mouth and
gums. This, together with problems for dental care
related to the tissues around the jaw and mouth
becoming tighter, can be a major problem.
Maintaining good oral hygiene is particularly
important in scleroderma but can be very
challenging.
I have had Raynaud’s since I was 10 years old. I am
now 20 and have been trying to conceive with my
partner but unfortunately have had 2 miscarriages 4
months apart, both before 8 weeks. I have been trying
to research pregnancy and Raynaud’s to see if that
may be causing me any problems. I would be grateful
for any information you have on pregnancy and
Raynaud’s.
The main thing to establish if you have Raynaud’s is
whether there is an associated medical condition
that may be relevant to pregnancy. The most
important association is with connective tissue
disease (lupus, scleroderma and others – these are
all rare) and this should be confirmed or excluded
by blood tests and capillaroscopy. It is important to
test for an antibody called anti-phospholipid (APS,
or lupus anticoagulant) as this can cause
miscarriages. Taking low dose aspirin is important if
you have a connective tissue disease or APS. If
you are concerned you should be seen by a
specialist in obstetric medicine. Raynaud’s often
improves during pregnancy but then frequently
worsens temporarily 3 to 4 months after delivery.
This is thought to be due to the hormonal
adjustments that occur at this time. Many drugs
used to treat Raynaud’s are not safe in pregnancy
and this needs to be discussed with your doctor.
Sometimes it is necessary to give infusions (drips)
during delivery and these should be warmed if
possible to avoid triggering Raynaud’s.
If you have a question you would like Professor Chris Denton to answer, please send to Head Office
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Research
Research
An Update from Bath
Pictured above are Prof Neil McHugh
and Dr Noeleen Foley
Our clinical service
We receive local and national referrals from
GPs and other consultants, and also
provide a shared care service with other
rheumatologists in areas of the country
where there is not a specialist CTD service.
Patients are seen in a twice weekly
dedicated CTD clinic which is led by
Professor Neil McHugh, Dr Ellie
Korendowych, Sister Sue Brown and
supported by two registrars. Nurse led
clinics provide all CTD patients with
education, advice, information and
counselling. This is particularly useful for
newly diagnosed patients and Sue provides
support according to individual need. Those
embarking on complex treatment plans or
struggling to come to terms with their
diagnosis and symptoms, also benefit from
Sue's specialist input. A nurse led
rheumatology telephone advice line is also
available to support patients between clinic
appointments as needed (01225 428 823).
As conditions like scleroderma can affect
many different parts of the body, we have
developed combined clinics with other
physicians. This reduces the amount of
clinics you may have to attend and also
allows the clinicians to discuss your case
together, enabling full discussion and
assessment of your condition. This joint
working also leads to further collaborations,
not only clinically but also in the research
field. Our combined clinics presently are:
1. Monthly pulmonary/rheumatology clinic
with Dr Noeleen Foley, Respiratory
Physician
2. Monthly
dermatology/rheumatology
clinic with Dr Chris Lovell, Dermatologist
3. Two monthly pulmonary hypertension
clinics with Dr Gerry Coghlan,
Cardiologist, Dr Jay Sunrathalingham,
Respiratory Physician
4. Two monthly renal clinics with Dr Chris
Dudley, Renal Physician
Research service
One of the main areas we concentrate on
is the measurement of autoantibodies, how
they can be used in the diagnosis of
04
scleroderma, and their relevance to the
underlying cause of the disease. Currently
the RSA supports the work of Dr Jean
North, a postdoctoral scientist who is
studying how autoantibodies may be
formed in scleroderma and how they may
have possible effects on cells. Over the
past few years we have been able to
discover new autoantibodies by using a
rapidly advancing technology termed
proteomics. Some of these new
autoantibodies are associated with
particular patterns of disease. We are also
able to offer a central facility which is only
one of very few world-wide that can
undertake measurement of the full range of
autoantibodies seen in scleroderma.
We have also established a large biobank
of 30,000 blood samples over the last 10
years from patients with connective tissue
disease including scleroderma, who have
consented to participate in research
studies. The biobank is interlinked with a
clinical database that collects anonymised
data related to patient outcome. This
allows us to investigate the behaviour of
certain diseases over time and the impact
they have on the individual. The database
is managed by Charlotte Caville.
Importantly the biobank allows us to
collaborate with other centres and provide
the numbers of samples in uncommon
conditions such as scleroderma that are
necessary to undertake genetics studies.
The biobank allows us to
collaborate with other centres
One of our other main interests is
measuring the blood flow in small vessels
(microvasculature) in patients with
Raynaud's and scleroderma. In our clinical
measurement department led by Dr
Nigel Harris, we have well established
techniques such as thermography, nailfold
capillaroscopy and laser Doppler imaging.
For example, Dr Harris in collaboration with
Dr Chris Lovell and Dr Lindsay Shaw is
completing a project funded by the RSA
investigating the way laser Doppler may be
used to measure the activity of localised
scleroderma in adults and children.
Finally, we have long recognised the
importance of collaborating with other
major scleroderma centres in the UK
in clinical studies. As part of the UK
Scleroderma Study Group, there have
been several important studies either
completed or near completion (e.g.
QUINs, FAST, Observational study in
diffuse scleroderma), in which our patients
have participated. Such studies provide
the knowledge base for providing the most
effective and safe treatment for patients
with scleroderma. We hope to continue to
actively undertake clinical studies
including those evaluating newer therapies
for Raynaud's and scleroderma.
Education service
We provide an active education service for
our patients, and local and national
colleagues. Patient newsletters are
available in the CTD clinic addressing
issues of importance to patients, giving
information about conditions such as
scleroderma, our current CTD service and
details of how to access help and advice.
Patient meetings are regularly held at the
RNHRD, with the local Bath/Bristol RSA
group meeting here in Bath twice a year.
During these meetings Sister Sue Brown is
available to answer questions and offer
advice and support.
Sue is chair of the United Kingdom and
Ireland Scleroderma (UKIS) group for
nurses and health professionals. This
national group meets to discuss
treatments, share good practice and
formulate and consider health professional
led research proposals. Sue is also
convenor
to
the
British
Health
Professionals in Rheumatology Special
Interest Group and is running a session on
scleroderma at the forthcoming national
conference in Glasgow in April 2009.
We meet with other clinicians with an
interest in scleroderma at the twice yearly
combined Bath/Bristol CTD meetings. This
is an opportunity to meet many different
CTD specialists (such as pulmonary,
cardiology, renal, dermatology and
ophthalmology consultants) and enables
us to set aside a full post graduate session
for CTD presentations. We also hold a
monthly CTD interest meeting for clinicians
at the RNHRD, where the full mutlidisciplinary team has the opportunity to
engage in presentations and discuss
important areas for practice.
We have also collated a number of
evidence based protocols to enable new
clinicians to access our diagnosis,
treatment and management plans.
Finally, our scleroderma patient education
and self management programmes have
been evaluated and re-designed and will
be available for any patients at the RNHRD
to attend. Our 2009 programmes will be in
March, June and September.
Sister Sue Brown MSc RGN EN (G)
Clinical Nurse Specialist in Connective
Tissue Diseases , RNHRD, Bath
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Research
The Lungs and Scleroderma
Early diagnosis, early treatment, longer life.
In the 1970’s kidney
disease was the
most
serious
complication
of
scleroderma. It was
the leading cause of
death and renal
dialysis
was
a
common issue for
people with the
condition. However,
Dr Sean Gaine
scientific advances,
the use of antihypertensive medication, have all but
eliminated this as a problem in
scleroderma.
The main problem now affecting people
with scleroderma is lung disease, which
can be either scarring in the lungs or
pulmonary hypertension. The prognosis of
these conditions is quite poor and so early
recognition to ensure treatment can be
initiated and is now a cornerstone of our
approach to scleroderma.
The symptoms of possible lung disease
include shortness of breath, chest pain
with exertion, and cough. It is very
important
that
if
someone
with
scleroderma develops these symptoms
that they be taken very seriously and
consideration be given to doing further
testing.
These tests would include a physical
examination by a physician, a chest x-ray,
lung
function
tests
and
an
echocardiogram. If there is evidence of
lung scarring and it is caught early there
are effective therapies now that can help
reduce the inflammation and preserve lung
function. This treatment would generally
include steroids and other agents that
strongly reduce inflammation.
If there is evidence of pulmonary
hypertension and disease of the blood
vessels, then a number of new therapies
have recently improved the outcome.
These therapies are designed to help
improve blood flow through the lung and
include such agents as endothelin
antagonists, prostanoids and indeed
Viagra, a phosphodiesterase antagonist.
These drugs have been shown to
significantly improve the symptoms of
patients with scleroderma.
It is very important that anyone with
scleroderma understands the importance
of lung disease and the importance of an
early diagnosis. These new treatments are
believed to work better the earlier they are
used.
So treat your lungs well. It is important that
anyone with scleroderma should not
smoke cigarettes. They should exercise
regularly - staying strong so that they will
notice any problems with breathing earlier.
You should encourage your doctor to send
you for lung function tests every year and
make
sure
that
you
have
an
echocardiogram at baseline to evaluate for
pulmonary hypertension.
Dr Sean Gaine
National Pulmonary Hypertension Unit
Mater Misericordiae Hospital
MediQuest
Update
MediQuest Therapeutics is a specialty
pharmaceutical company using its
proprietary topical delivery system
targeting infectious and inflammatory skin
diseases and conditions. The company's
major efforts are focused on projects
targeting Raynaud's, nail psoriasis and
actinic keratosis.
Vascana
Vascana is a topical therapy indicated for
the treatment of symptoms associated with
Raynaud's. Raynaud's patients, 90 percent
of whom are women, can experience
severe pain associated with chronic
vasospasm episodes in their hands, feet
and other extremities. Vascana is a locally
acting, topical formulation that is designed
to be applied to prevent or treat the
symptoms associated with Raynaud's
episodes, which would allow patients
control over their disease. No drugs have
been approved by the Food and Drug
Administration (FDA) for the treatment of
Raynaud's.
FDA indicated that the New Drug
Application (NDA) could not be approved
in its present form. The FDA identified
issues that must be addressed by
MediQuest before final marketing approval
will be granted for Vascana. MediQuest will
discuss these issues with the FDA and will
provide an update when appropriate.
Different Types of Scleroderma
Many patients are still not sure what type
of scleroderma they have.
Below is a brief outline of the different
types of scleroderma, also called systemic
sclerosis.
Diffuse Cutaneous
Patients with Diffuse Cutaneous Systemic
Sclerosis present with skin changes
(puffy or hidebound), have truncal skin
involvement and ‘creaking’ tendons at
joints for example wrists and elbows. Early
lung disease, kidney, gastro-intestinal and
heart involvement become evident in
some patients. There are changes in the
nailfold capillary and certain antibodies
maybe present in the blood. Anyone with
diffuse scleroderma needs to be checked
frequently (at least every 6-12 months) in
the first 5 years.
Limited Cutaneous
Morphoea
Patients with Limited Cutaneous Systemic
Sclerosis will have had Raynaud’s for
years (occasionally decades) and there
will be skin involvement to the hands,
face, feet and forearms. These patients
used to be diagnosed as having the
CREST syndrome. Patients with limited
disease need checking every 6-12
months, depending on the stability of the
disease as it is now known that pulmonary
hypertension may become a problem in
some patients.
This affects the skin, beginning with an
inflammatory stage followed by the
development of one or many slowly
enlarging patches or plaques. These
plaques are usually oval in shape but vary
in size and colour and may enlarge or
shrink,
sometimes
disappearing
spontaneously.
Localised scleroderma
There are two types of localised
scleroderma - morphoea, linear or a
combination of the two. These types of
scleroderma are more common in
childhood-onset disease but can affect
any age group.
Linear scleroderma
This usually develops in childhood and can
affect the growth of a limb. It is a form of
localised scleroderma which starts as a
band-like thickening of skin, usually limited
to one area such as an arm, leg or forehead
(en coup de sabre). Unlike morphoea,
linear scleroderma tends to involve layers
of tissue below the skin and can sometimes
affect the muscle and bones and finally the
mobility of the underlying joints.
05
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News
10 Blood-pumping Foods
1. Wheatgerm is a great source of vitamin E - an Australian study of patients with
diabetes (who suffer from reduced circulation) revealed that this antioxidant vitamin
improved their blood flow.
2. Mackerel is rich in omega-3 essential fatty acids, which aid healthy blood flow.
3. Onions contain a plant chemical called allicin - a US study found it breaks down to
produce hydrogen sulphide, which relaxes blood vessels.
4. Museli is a tasty source of oats and other soluble-fibre-rich grains, which help lower
your levels of artery-coating cholesterol.
5. Brussels sprouts are full of folic acid, a B vitamin that reduces blood levels of
homocysteine, helping blood flow more freely.
6. Pomegranates appear to have circulation-boosting effects. In a small study, patients
who drank the juice daily for 1-3 years had less thickening of the arteries, and
therefore better circulation.
7. Chillies - A study of 27 healthy people found that eating chilli-rich diets improved
circulation by reducing the potential for arteries to become clogged up with blood
lipids (fats).
8. Kiwi fruits contain vitamin C, and American research found that 2g of vitamin C given
to smokers improved the blood flow in their coronary arteries.
9. Peas are a source of vitamin B3. A study found that people with Raynaud’s who took
them had fewer and less severe symptoms.
10. Grape juice is rich in phyto-chemicals called phenols. Research suggests that four
glasses of red grape juice a day could help boost circulation.
Why the name?
The name Raynaud’s Disease was given to
this condition by a French doctor, Maurice
Raynaud in 1862 when he published a
thesis on ‘Gangrene and Intermittent
Asphyxia of the Extremities’.
Since Maurice Raynaud’s time, many
theories as to the cause of Raynaud’s have
been explored but to date no one cause
has been found. Researchers have
however, discovered much more about the
condition and it is now known to be very
common, varying in severity from mild to
severe.
LOCAL CONTACTS
Eastleigh, Kathy Allen
02380 610678
Cumbria, Ruth Randall
01229 835727
Taken from Healthy Magazine Sept/Oct 2008
Dorking, Sue Neve
Best Buy Gadgets
01306 713382
Belfast, Heather Semple
My son saw the Cullinare One Touch Automatic Jar and Can
openers advertised on television and a member wrote in to tell
us how good they were, so I decided to try them out. I can
honestly say I have never found a gadget as brilliant as the
Cullinare tin opener. You just place it on the tin and press a
button and hey presto the lid is taken off!! The jar opener is
also a great aid in the kitchen - it is a bit like a darlek! You place
it on the jar, press the button and clamps come in to hold the
jar, then a second set of grippers come in and hold the lid. The
Jar Opener
gadget stops once the lid is removed. I would certainly
recommend these items if you have difficulty opening tins or
jars.
The only downside was that I couldn’t get either gadget out of
the packaging without help! The company have had so many
complaints about the packaging that they are looking into it.
Cullinare don't sell direct to the public but the gadgets are
available by ordering online from Lakeland and Amazon or they
can be purchased from Argos.
Anne Mawdsley
01942 877259
Co. Durham, Jessie Pickering
01388 527840
Fife, Rose Bevan
01382 552272
01386 553392
Burton on Trent, Helen Nutland
01283 566333 Ext. 5032
Bristol, Margaret Goff
Can Opener
These new stylish pens are printed with the Association's details. Retractable ballpen with
translucent finish and chrome highlights. Its beautifully moulded design gives this high
quality ballpen perfect balance, and a comfortable matching rubber grip completes the
look.
06
Manchester, Gill Holden
Pershore, Shirley Lynch
New Printed Pens
The pens cost £1.25p each including p & p. To order
please send a cheque made payable to the 'RSA' to
112 Crewe Road, Alsager, Cheshire, ST7 2JA.
0289 0851210
01454 310225
Contacts Wanted
Victoria Nash from Slough has
erythromelalgia and Sue Taylor from
Penzance has scleroderma. They would
like to hear from others with the condition,
preferably who live in their respective
areas.
Please write to Victoria or Sue via
Head Office and we will forward your
correspondence.
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News
Treatment of Ulcers
What are ulcers?
Ulcers are erosions or holes in the skin
which can be tender and very sore. These
can develop particularly on the fingertips
and underneath the nails and can also
appear on the feet, elbows and legs. They
are extremely painful and can take a long
time to heal due to the poor circulation.
They may be associated with pieces of
calcium which work their way to the
surface and break through the skin,
becoming infected and causing pain.
What can I do to prevent
ulcers?
If you are prone to develop these on your
fingers and toes, care should be taken to
maintain good circulation by keeping your
hands and feet warm. It is also essential to
keep the trunk of the body warm. Make
sure that your hands are kept as clean as
possible and do not be too aggressive
when manicuring your cuticles.
How is an ulcer treated?
If an ulcer develops it needs medical
attention and an antibiotic is usually
prescribed. In order to heal, dead tissue
needs to be removed and infection needs
to be cleared. Unwanted crusts and dried
pus can be removed by soaking the ulcer
in luke-warm water for approximately five
minutes. The area should then be allowed
to dry before applying a dressing. There
are several good dressings available but
they need to be used properly to get the
best results. Treatments available from
your doctor may include antiseptic or
antibiotic ointments. Sometimes a dry
dressing is best, such as gauze or a nonadherent dressing or one of the
hydrocolloid adhesive preparations.
Alternatively, you may be given a calcium
alginate dressing derived from seaweed.
The dressings have the great advantage
that they can be removed from the ulcers
by washing with saline solution.
Skin Care &
Digital Ulcers
Leaflet
To request a copy of this
leaflet please send an
SAE to RSA, 112 Crewe
Road, Alsager, Cheshire,
ST7 2JA
Medical Records Access for England
A summary of everyone’s medical records
is to be put on a central NHS database in
England during the next two years.
Changes to the plans for the national
medical records database will require NHS
staff to ask a person if they can access
their medical records, unless the person is
unconscious or unable to give consent.
This summary will be available to clinical
staff throughout the country and be
updated at each appointment. It will
contain a treatment history, recent medical
history, medication and allergies, although
the full details have yet to be finalised. The
summary record is designed to give
paramedics and staff in casualty units and
walk-in centres immediate access to a
person’s records.
The changes were made after an
independent report recommended that
health staff should have to ask for
permission - a system used successfully in
Scotland and Wales. While there are
concerns about records being included
automatically, there are no plans to
change this. People not wanting to be part
of the system will need to register to
prevent their records going onto the
national database.
‘The system uses the strongest national
and international security measures
available,’ said a spokesperson from the
Government agency that is setting up the
system. ‘NHS staff have to pass three tests
to access your records.’
Taken from Arthritis News, December 2008/
January 2009.
NURSE
ADVICE LINES
Clare Das & Sally Reddecliffe
Royal Free
020 7472 6354
(For Pulmonary Hypertension Enquiries)
Specialist Nurses
Royal Free
020
7830 2326
Sue Brown
Bath
01225 428 823
Liz Wragg
Manchester
0161 206 0192
Specialist Nurse
Leeds
0113 3923 035
Steve McSwiggan
Dundee
01382
633 957
Jan Lamb
Liverpool
0151 525 5980
Bleep 2231
Karen Walker
Newcastle-u-Tyne
0191 223 1503
Sally Marsh
Northampton
01604 523 849
Audrey Hamilton
Belfast
02890
561 310
The nurse advice lines are for members
to use whenever they have a problem or
just want reassurance. They are not a
replacement for care by your GP but very
often it helps to talk to a nurse who can
listen and offer advice. It should be
emphasised that the nurses who run the
advice lines also have very busy
schedules within their hospital and it is
inevitable that on many occasions you
will get an answerphone asking you to
leave your details for the nurse to get
back to you as soon as they are available.
Some of the nurses work part time and
therefore if it is their day off or at a
weekend, it may take longer. The above
advice lines are not intended for use in an
emergency.
Manuka Honey
Manuka honey is still being recommended for ulcers and abscesses. It absorbs the pus and doesn’t stick to the dressing.
Ordinary honey is cheaper and also seems to work, but Manuka (from New Zealand) is sold for medical application.
07
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News & Views
Writing Competition Winner Melanie’s Story
One morning in 1960, I
awoke to find my feet
covered in blisters - the
pain woke me - I had
been sitting in front of an
open fire the night
before in fur lined boots
with freezing feet and
blistered
my
feet
through the boots. Time
Eve Warr
to visit the GP! She
referred me urgently, by
phone, to the hospital and I was diagnosed
with Raynaud's. Within two weeks of visiting
the surgery the neurologist said he would
have to carry out sympathectomies for my
hands and feet. There would be four
operations, two on my back and two on my
neck. I was a teenager and scared - I had
never been ill since a child, although always
cold.
Nobody I knew had ever heard of Raynaud's
and I duly went into hospital. The ward was
long and daunting and I was the youngest
person there. I took a while getting over the
operations but ended up with two beautifully
warm feet, which to this day remain warm.
The hands were less successful. After one
month, they returned to their painful state
and I was told there was little more that could
be done.
I married and had two children. They grew up
and my hands got worse. I was later referred
to the Royal Free Hospital in Hampstead
under the care of Professor Carol Black, who
suggested iloprost infusions.
My daughter Sally, who had been as warm as
I had been cold, also developed Raynaud's.
My heart sank. She too had to have a
sympathectomy for her feet, as apart from
the numbness and pain, she was unable to
drive her car. Sally was unperturbed and
insisted that, like me, she would learn to
cope and live with the condition. The
sympathectomy for her too was a great
success, although she still suffers with her
hands and has had bouts of treatment in
hospital.
We now have three beautiful granddaughters with another baby due, and I pray
none of them will develop the same
condition.
How have I handled the illness over the
years?
It hasn't been easy but I have a determination
not to let Raynaud's or the accompanying
gut and digestive problems, along with the
finger ulcers in the winter, ruin my life. Our
state of mind is important how we handle the
illness. Nobody said life would be easy, and
if we look around, nearly every family has
08
something to cope with, be it family
problems, money worries, problem teenage
children and of course, illness. I try to not let
minor things irritate me like they used to.
It had become an office joke - me
wrapped up in a thick jacket and scarf in
our air-conditioned office. ‘Not planning
on staying, Mel?’ colleagues teased.
Thinking positively is a definite help,
especially when harsher weather is here
(although we all know that the condition is an
all year round one). Yes, it is hard when the
whole body temperature is low and you feel
vague and sleepy. The ulcers seem
unbearable, the joint aches and pain prevail
and you do not want to venture out. At this
stage I put on plenty of clothes, boots, socks,
tights and woollen ski pants, trousers,
several jumpers, plus all the outdoor gear,
hat and men-sized gloves and hand
warmers. What sartorial elegance that image
produces! Even the dog looks at me in a
strange manner. Looking like the Michelin
man, we venture out. I see people, trees, the
countryside in all seasons and meet and chat
with people (if you want to meet people, get
a dog!). My circulation is jerked back into life
for a while.
I was 38, loved my high-flying PA job in
London. I was too busy at work to worry
why I suddenly seemed so cold, why my
fingers turned blue. It had been going
on for weeks - ever since a chilly, damp
cycling holiday in Slovenia. After that,
my fingers had swelled and none of my
rings would fit.
It no longer bothers me what people say,
such as “are you really cold?” and “you won't
need that extra cardigan/jacket/coat in this
weather” and “why do you keep dropping
everything?” “why have you got gloves on
today?” and “why are your hands that awful
colour?”
I now have my inpatient treatment locally and
can hear my consultant's resounding voice
and laughter as he approaches my bed - he
immediately makes me smile, and he is
always ready to listen and help with
problems.
We can change the way we
think about illness
I have a patient, kind, loving husband (who is
used to clearing up broken glass or china!),
children and grandchildren. My friends and
family know the problem and are caring and
thoughtful. My little grand-daughter looked at
my purple hands recently and said “but they
are kind hands grandma”. It made me think
that you can be happy when unwell.
I send my love and thoughts to all those
reading this who are much worse off than I
am.
Eve Warr, Colchester
The competition runner up was Annette
Dawson. To read her piece go to
www.raynauds.org.uk and click on
‘Patient Stories’. Thank you to everyone
who sent in entries for the competition.
Six months later, when my legs puffed
up, I saw the company doctor. He
referred me to a vascular specialist, who
diagnosed me with Raynaud’s. The
specialist said it could get worse over
time. I didn’t want to think about it, and
was too focused on work to take it in. I
was given drugs for the Raynaud’s and
patches for the tops of my hands to
boost my circulation. Although the
drugs helped, the patches didn’t and
soon I was getting a stiff pain in my
shoulders, knees and other joints arthritis. Then my legs and feet swelled
so much that only flip-flops would fit.
The skin on my face tightened too, so
opening my jaw was difficult and my lips
looked thin.
Friends and colleagues were supportive
and kind. But when my terrible tiredness
came on - as if I’d walked miles and
couldn’t take one more step - I became
weepy and felt vulnerable. I’d been ill a
year now and my doctor referred me to
a specialist. She diagnosed aggressive
diffuse scleroderma.
Devastated and fearful, I was then
admitted to hospital for treatment.
Gradually my legs improved but a few
months later, still very ill, I opted for early
retirement. My whole life had turned
upside down. I moved out of London,
back with my parents, and sank into
depression. I’d lost my confidence and
didn’t want to talk to anyone.
The next year was even more miserable.
Ulcers on my ankles and fingertips
caused indescribable pain. Acupuncture
eventually helped me. It restored my
confidence so I could talk to family and
friends again.
I’m calmer now and realise that you
have to enjoy your life no matter what.
Being ill has taught me not to think too
deeply, and to smile, because it brings
out the best in people.
Melanie Bowen
Taken from That’s Life, November 2008
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News & Views
My Hands Turned White
Fiona Trotter
When Fiona, 29,
was first diagnosed
with Raynaud's her
attacks were so
severe and frequent
that at times, she
was even unable to
walk.
But
with
exercise, alternative
remedies and other
lifestyle changes,
she is now fighting
fit.
‘For as long as I can remember I've been
sensitive to the cold. But I assumed it
was because I was slim with little body
fat. It wasn't until I was 18 and at
university that I first began to notice that
something was wrong with my hands.
An attack could happen at any time. I
would be drying myself after a swim
when my hands would suddenly turn
white then blue and become unbearably
painful. I couldn't do even the simplest
things, such as hold a pen and the
attacks could last for up to 45 minutes.
Gradually they became more frequent - I
was having up to four attacks a day. It
was when they began in my feet that I
started to worry. One night I went out
wearing strappy shoes. I was waiting for
a taxi when I had an attack. I couldn't
stand, let alone walk and had to find a
seat to wait it out. It was then I decided
to see my GP.
Daunting diagnosis
The diagnosis was straightforward
enough. After I explained my symptoms,
the doctor told me I was probably
suffering from Raynaud's, a condition
that affects blood flow to the fingers and
toes.
I was referred to a rheumatologist, who
explained how the condition restricts
blood flow to the fingers and toes in
extreme weather. People think it's a coldweather condition, but in some ways the
summer can be worse. Sudden changes
in temperature, swimming and air
conditioning can all trigger attacks, and
because you tend to wear lighter clothes
and open shoes, you are less protected.
I knew the condition wasn't serious, but
it is debilitating and I was daunted at the
thought that I was just going to have to
live with it.
Coping
Over the next few months, I had so many
attacks that it was becoming impossible
to lead a normal life. I had to wear
gloves if I wanted to get things out of the
fridge and I just felt so helpless. Having
such a supportive family and friends
kept me going however, and gave me
the confidence to try to get better.
I went back to the doctor, who
prescribed a vasodilatory medication to
help improve the blood supply to my
hands and feet. But all drugs come with
side effects - one gave me such terrible
headaches - so it took a while to find
something that suited me.
An alternative approach
Two years ago, I decided I no longer
wanted to be on long-term medication
so I decided to try to wean myself off
the tablets, and start managing my own
condition.
I started by taking a high-strength
ginkgo biloba supplement. Ginkgo has
been proven to help with circulation
disorders, as has ginger, which I began
including in my diet. I also dressed
warmly and bought gloves containing
silver to protect my hands from the cold.
I now wear boots for most of the time
and take exercise more seriously, to
boost my circulation.
Little steps, big differences
These adjustments may seem small, but
they have changed my life. I no longer
take any medication, and suffer only one
attack a week. When they do come,
they’re generally shorter and milder. I
now feel in control of my body and don't
let my condition stop me from doing
anything. It may never go away but it
certainly isn't holding me back’.
Fiona’s story appeared in Zest magazine
Patient Opinion
Inform others about your experiences of
NHS healthcare by logging on to the
Patient Opinion website.
Patient
Opinion is a free, confidential non-profit
service. Visit www.patientopinion.org.uk
or call 0845 113 0012.
Shop Online & Raise Money
Easyfundraising.org.uk is a free online shopping directory which enables charities to raise
valuable funds simply by shopping online. Every time a purchase is made, the retailer will
make a FREE donation of up to 15% to the cause, which the buyer chooses to nominate.
It does not cost you a penny extra to shop and raise funds in this way, so please visit
www.easyfundraising.org.uk and nominate the Raynaud’s & Scleroderma
Association as your chosen charity.
Beat the Freeze
Home
Simple measures to keep you cosy
indoors include installing draught seals
around your window frames and
draught strips on the bottom of doors.
Heavy curtains are good insulators and
make sure you keep furniture away from
radiators so the heat can circulate
around the room.
Clothing
Wrap up! Several layers of thin clothing
will keep you warmer than one thick
layer because the layers trap body heat
and warm air. Clothes containing wool,
cotton, silver or fleecy synthetics are
best. Put on a coat, scarf, gloves, hat
and warm shoes when you go out. A
waterproof outer layer is also a good
idea because heat is lost 20 times faster
through wet clothing. Stay cosy in bed
by wearing bed socks and thermal night
clothes.
Exercise
As the weather gets colder it can be
tempting to hibernate but resist the urge
to huddle up beneath duvets for hours
on end. According to fitness expert,
Jane Taylor, staying active is important
in the winter.
“This is especially true for older people
who spend much of their lives being
sedentary,” she says. “Many people are
under the illusion that you lose energy if
you’re up and about but you actually
generate more energy and heat by
moving around. If you don’t want to be
outside, do the equivalent of a mini
workout inside by marching on the spot
or, if you have stairs, go up and down
them a few times. Exercise also helps
joints which tend to stiffen in winter.
Circulation becomes sluggish when
you’re cold, but getting the heart
pumping means you get blood to the
extremities so your toes and fingers
warm up.”
Taken from the Daily Express
Mail Order
Leaflet
Our new mail order
leaflet is now available
on receipt of an SAE.
09
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Fundraising
Raynaud’s Awareness Month
February 2009
Percy Penguin
Following our Scleroderma Week in November we have
been concentrating our efforts to highlight Raynaud’s
during February with our Winter Blues Campaign. Up to 10
million people in the UK suffer from Raynaud’s in one way
or another yet the condition gets very little publicity unless
we really work at it.
Press releases were sent to journalists throughout the UK
and awareness packs distributed to hospitals and health
centres nationwide. There is still time left if you would be
happy to speak to a journalist on the phone about your
Raynaud’s. Please call Fiona Trotter if you can help, on
01270 872776 or email: [email protected]. Often a
paper will only print an article if they are able to interview a
local sufferer.
Any help which members can offer would be very much
appreciated.
How Can You Help the RSA?
Gift Aid
Gift Aid is one of the simplest and most effective ways of giving to charity. Using Gift Aid
means that for every pound you give to our charity, the RSA will receive an extra 28 pence
from the Inland Revenue. This means that a £10 Gift Aid donation, is worth £12.80 to the
charity - and it doesn't cost you a thing. We will simply recover tax which you have
already paid. It can apply to donations of any amount. A single Gift Aid declaration can
apply to all past donations you have made (since April 2000) and to all future donations
you make. Next time you give a donation or renew your membership please let us know
if you are a taxpayer.
Justgiving
Justgiving is a major online sponsorship agency. You can use this site to make a
donation to the RSA. You can also create your own fundraising page on their site and get
sponsors to give online.
Justgiving then send us payments direct. If you are a UK taxpayer, they also reclaim the
tax on our behalf. See www.justgiving.com/raynauds
Donations in Memory
At a time when charities are going to find it difficult to raise funds, we are most grateful
for the donations which have been sent in lieu of flowers, in legacies or donations in
memory of loved ones. Leaving money to charity is tax-free so it is a good way to save
inheritance tax and get 100% of your gift to the cause which you want to support.
Legacies left to the RSA help to fund vital research. It acts as a heartfelt, long lasting
gesture of support for people facing Raynaud’s and scleroderma in the future.
Legacy Leaflet
Legacies are something that we are often asked about and a leaflet is available, which
explains how your Will could make a difference to the RSA. To request a copy please
send an SAE with your request to Head Office.
Musical Fun
Lin Ford organised a music event at
Fairkytes in Essex which raised
£134.50 for the RSA.
Pictured left, Lin is seen instructing
the children on how to perform a
puppet dance.
10
Donations &
Fund Raising
There have been an incredible number
of donations since the last issue so we
are unable to list all below. However, we
do thank everyone who has made a
donation or taken part in a fundraising
event. Our thanks to:
Aviceena PLC; Amicus Longton &
Uttoxeter; Bearwood Lakes; Bauer
Publishing; Encysive UK Ltd; Misses
Barrie Charitable Trust; Multithon Trust;
Glenwood Laboratories;
MurphyNeumann Charity Company Limited;
Oakley Charitable Trust; Rosetrees
Trust; Sir Jules Thorn Charitable Trust;
Thorpe Willoughby Primary School;
Tayport Charity Shop; Woolf Charitable
Trust and Yorkshire BS Charitable
Foundation.
Our special thanks also to the following
individuals:
B Arnold; M A Amess; M Abdallah; M
Boulter; T S Bailey; D G Betteridge; L
Burwitz; W J & I Beveridge; V Birch; C
Buckledee; M Bowen; R J Chalk; B L
Collins; L L Corless; J E & M Collins; N
P Curtis; D H M Dalrymple; F G & M O
Delf; D G Doyle; A P & L Durrant; M
Gates; A F Gibson; C A Gray; C M & J
E Griffith; W E & J M Guiel; R H & B L
Gunston; D S & B Hayer; C Hoddy & A
E Paine; M & W Hutton; R Hopkins; J
King; S M E Keating; D Kerr; T H & F E
E Labrum; M Lamb; R & L Limond; C A
Llewelyn; B Lowe; W A & E Moore; E R
C Mouat; R S & J M McGibbon; D T &
D Newton; L & N Nesbitt; M C Nicholls;
V & B Prior; E J M Pott; B E Purbrick; P
Rebbeck; A M & K Richards; B F & J F
Roberts; M V & M I Robson; M E
Roberts; J C Rush; H J & E Rylance; D
Smith; M K Sangan; N Smith; T M
Sheehan; J & J Thornton; C K Todor; R
H & B J Trevains; M & W J Tucker; I M
Webb; M A & H L Wrixon; D A & B
Wyllie; L Westerman & H Jennings; C P
& S F Wigfield and P A Yap.
Great Eastern Run
Bethan Collins
and her husband
Richard
Munn
(pictured right)
took part in the
Great
Eastern
Run and raised
£681.00 for the
RSA.
Many thanks!
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Info
RRP
Always read the label
No More Cold Hands
Battery Heated Gloves/Mittens
Lectra Gloves are waterproof, durable everyday
gloves with the added benefit of having battery heat
when it gets extra cold. Insert ‘D’ size alkaline
batteries (which will last 4-6 hours) or rechargeable
batteries to take the chill off. To find the right size
please measure the circumference of your knuckles
excluding the thumb. Quote the measurement for size.
£39.99 + £3.50 (p+p)
Optional Charger with 4 ‘D’ size rechargeable batteries £19.99
No More Cold Feet
Battery Heated Socks
The Lectra Socks were originally developed for
commercial fishermen. The ‘D’ size alkaline battery
provides 4-6 hours of continuous heat, more when
used intermittently. Rechargeable batteries can be
used as well. The heating elements safely buried in a channel located in
the toe area. Please quote your shoe size to order.
£29.99 + £3.50 (p+p)
Optional Charger with 4 ‘D’ size rechargable batteries £19.99
Unit 3, Home Farm, Holt Road, Horsford,
Norwich NR10 3AG
Tel: 01603 890555 • Fax: 01603 898777
Charity Flowers
Treat that special someone to a delightful bouquet of flowers.
RSA have teamed up with Charity Flowers Direct to offer supporters a superb flower delivery service
and 15% of the order cost is donated to the RSA.
Charity Flowers Direct is the only flowers by post service wholly owned by a charity and where all the profits are donated to charitable
causes. Every time your choose Charity Flowers Direct, you will be making a valuable contribution to our important work.
Why not treat someone by ordering from Charity Flowers Direct.
All flower bouquets are packed in a presentation box together with cut flower food and your own personal message.
All flowers are sent by first class post.
To order your flowers now visit www.charityflowers.co.uk or call the 24 hour phone line on 08705 300 600
remembering to choose RSA when you order.
11
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EX02 Products
DWP Information
Day in Birmingham
The following was sent to us by Tom
Reddings, Secretary of the Burton-uponTrent Support Group, following his
attendance at the DWP Information Day in
Birmingham, which he attended on behalf
of the RSA.
Purpose
To provide information to the Department
of Work and Pensions (DWP) staff,
especially those who make decisions on
benefits.
Feedback
Ten other organisations including Lupus,
Fibromyalgia, Sickle Cell and a hospice
attended the event. All groups had notice
boards and leaflets. The DWP staff visited
the stands and we described the
conditions and difficulties. Most staff were
very interested and took leaflets. We tried
to ensure that everyone had at least one
leaflet with the RSA contact numbers for
further enquiries. Many knew of Raynaud's
but few knew about scleroderma. I
estimate we spoke to about 40 people.
Volunteers from other organisations also
exchanged information.
After a sandwich lunch Colin Smith led a
discussion.
Firstly
he
spoke
of
improvements that the DWP are making to
ease claiming benefits. He then took
questions and comments from the
volunteers. Some of the volunteers are
directly involved in making claims for
sufferers, e.g. for people who are deaf.
Neither my wife nor I were sufficiently
conversant with the issues which two of our
members are experiencing. However, on
other matters the two way exchange
seemed to be very useful.
Colin thanked all participants and
promised to include us in any future
meetings.
Conclusion
It was very good to increase awareness of
Raynaud’s and scleroderma to the staff of
the DWP and provide them with contact
details of the RSA.
Family Weekend
The date for the Family Weekend 2009 is
16th, 17th & 18th October in Chester. Any
families who are interested in joining us
please contact us asap for an application
form as we need to confirm the booking.
This is for families who have a child with
scleroderma who is 18 or under.
When Anne went down the Bob Run in St Moritz, exo2 kindly provided her with a heated
gilet which was very effective. They now have a new range of heated garments. Over
Christmas Fiona and Anne tried out a few of their new items namely the heated jacket,
the neck warmer and back warmer.
Heated neckwarmer (HEATWAVE Neckwarmer)
When Anne first put this on it felt rather bulky around her neck due to the velcro fastening,
but after wearing it for a short time she got used to it (even wearing it in bed) and enjoyed
the heat. It is ideal if you have problems with neck pain but also your body feels warmer
when your neck is warm. The miniature power pack and charger heat the neck warmer
for up to 6 hours per session. While in use the power pack fits elegantly into a small
pocket on the side of the neck warmer.
Heated back warmer (HEATWAVE Heated Back Support)
The back warmer has a portable battery pack and the velcro means that it fastens easily
around the waist. This allows the back warmer to provide heat to the lower back area.
After having it on a few minutes Anne and Fiona could really feel the heat. There are struts
inside for lumbar support. They both thought it was excellent and would certainly
recommend it to others.
Heated jacket (STORMWALKER 2 Heated Jacket)
This jacket has a heating element in the lower back and both
front pockets and the power pack fits snuggly into one of the
pockets. You can unzip the sleeves if preferred. The jacket
really made a huge difference when going out (Anne wore it
indoors as well!). The heat generated feels really warm and
cosy. Anne said that she could happily wear it all day every
day! Personally she would like it to be slightly longer but as it
is reasonably lightweight and not bulky, it is fine to wear under
a coat. The other advantage is that the switch on the power
pack can be turned on and off as required. The heated panel
located at the lower back/kidney area, is designed to attain a
temperature of approximately 43OC, lasting for up to 3 hours on a single charge, or
several days when used for quick 'boosts' of warmth. The heated panel technology is so
versatile and robust it can even be hand washed!
All the items have batteries which are mains rechargeable and easy to use. If you would
like to speak to Anne or Fiona about these garments please call the Association on 01270
872776.
The following was sent to us by a member who purchased the sleeveless jacket:
“Just to let you know what a great product the exo 2 jacket is! I have Raynaud’s and wear it all day
between December and March (even when indoors!), and get it out for chilly days. It has greatly
reduced my symptoms. I would go as far as saying that this has changed my life”. Nikki Adams
EXO2 are offering a 25% discount to our members on any purchase they make via their
webshop on www.exo2.co.uk or alternatively you can send a cheque made out to their
parent company, Typhoon International Ltd. The discount code which needs to be
included in the comments section during website purchase or on the letter
accompanying any cheques is RA2509.
Ladies Day Tickets, Aintree
The RSA still have a few tickets available for Ladies Day on 3rd April at the Grand
National Race Course, Aintree. Treat yourself or others to a day of sporting fun and fine
dining in the corporate hospitality suite in aid of the RSA.
The package includes:
Official Admission Ticket, Exclusive Luxury Facility, Coffee, biscuits and morning
papers, Champagne reception, Complementary Bar-Open all day, Four Course Silver
served Lunch (Club class), Traditional Afternoon Tea, On-site Betting Facilities, Live TV
Monitors & Replays, On-site Car Parking, Events Team Management & Hostess
Service.
Don’t miss out on what could be a memorable day. We have obtained the tickets
through Nationwide Sports Hospitality. They will be sent out 4 weeks prior to the event.
For further details contact Anne Mawdsley at the RSA on 01270 872776.
Annual Conference, Chester September 26th 2009
PUBLISHED BY:
RAYNAUD’S & SCLERODERMA ASSOCIATION
Charity Reg. No. 326306
112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556
Email: [email protected] Website: www.raynauds.org.uk
EDITOR: Anne H Mawdsley MBE
Raynaud's & Scleroderma Association © Copyright 2009. All Rights Reserved.