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30th Anniversary Edition

Issue No. 119

Celebrating 30 Years 1982 - 2012 Our thanks to everyone who joined us for the Reception at the House of Commons on 1st February to celebrate our 30th Anniversary.

This was indeed a landmark for the RSA. Sincere thanks to Professor Dame Carol Black

Volume 1 2012

In this issue...

and Fiona Bruce for their support and kind words and to Bayer HealthCare for funding this event, which was attended by a wide selection of politicians, health professionals and patients.

Message from The Prime Minister and the Deputy Prime Minister The Prime Minister, the Rt Hon David Cameron and the Deputy Prime Minister, the Rt Hon Nick Clegg MP, sent a message to Anne as follows:

The Rt Hon David Cameron and the Rt Hon Nick Clegg MP

Medical News Page 6

“Please accept our congratulations to you and all of your team at the Raynaud's & Scleroderma Association as you mark its 30th Anniversary. We are pleased to offer you our continued support. Your role is vital in supporting people with these often little known and poorly understood conditions, in improving their health, their quality of life and outcomes.

We wish you every success for the future”.

Fundraising

Message from Fiona Bruce MP (Congleton) “I am delighted to be sponsoring this Reception in Parliament today, which celebrates the 30th Anniversary of the Raynaud's and Scleroderma Association - a charity which I am delighted to have based in Alsager within my Congleton Constituency.

Under the inspirational direction of Anne Mawdsley, the RSA has increased awareness of Raynaud's and scleroderma, developed better communication between doctors and patients, made advancements in research, treatment and care and seen mortality rates decrease.

Today's Reception in the magnificent setting Fiona Bruce, Dame Carol Black and Anne Mawdsley of the Terrace Pavilion, on the banks of the Thames and at the seat of Government, is a chance to celebrate the achievements of the past 30 years. An achievement which has not gone unnoticed by the Prime Minister and the Deputy Prime Minister.

After 30 years, the RSA does not rest on its laurels and is committed to offering even greater support to those suffering from both of these conditions.

I was delighted to launch the Cool Million campaign back in August 2010; a campaign which seeks to invest in new research. At the last count the total was £500,000 - an outstanding achievement and testament to the dedication and commitment of the RSA's supporters.

Today, I wish to take this opportunity to thank you for attending this Reception. Thank you for all you have done for the RSA and more importantly, thank you for all that you will do in the future to support this remarkable charity and its extremely important work.”

Cool Million Appeal Now Over £550,000

Page 12

Fundraising Page 12

Fundraising Page 13

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Welcome Dear Readers, Anne H Mawdsley MBE

As we have reached our 30th Anniversary I would like to thank everyone who has supported the Raynaud’s & Scleroderma Association since 1982. Many of our members have been involved from the very beginning and we have taken a journey together. Other people have joined us along the way. It has been an interesting, fulfilling and satisfying journey in so many ways and has had a great impact on my life. My thanks you to you all.

Awareness Month

Cool Million Update

My thanks to everyone who has supported our February Awareness Campaign. Regional and national newspapers including The Times and The Daily Telegraph, have covered stories and provided information to people with Raynaud’s and we have had a tremendous response. Several radio stations covered the topic, especially once the snow arrived during the second week!

I am delighted to tell you that so far we have raised £550,000. I can’t thank you all enough for the support which you have given to this appeal but I can assure you that the money will be put to good use towards funding only the best quality research to help people with Raynaud’s and scleroderma in the future.

Renewal Thank You

The article on page 7 has been taken from our new Digital Ulcer leaflet. If you would like to recieve a copy please send an SAE with your request or you can download the leaflet from our website.

My sincere thanks to everyone who sent in their renewal membership forms so promptly and for the most generous donations which were sent over Christmas and the New Year.

Pedalo Challenge A sponsor form for my Pedalo Challenge is enclosed on the reverse of the address label sheet. The event will take place on 11th June when I shall be pedalling a pedalo five miles along Lake Windermere with ex EastEnders actor Don Gilet (Lucas Johnson). Dr Mark Edwards, Rheumatologist at Southampton, will be in our support team. If you would like to donate online, my Justgiving page can be found at www.justgiving.com/rsapedalo. I very much hope that this challenge will boost the Cool Million. I can’t believe that it is two years since Jo Kaddish and I took part in the Husky Challenge in Finland. After temperatures as low as minus 32 degrees in the Arctic and in order to keep my doctors happy I decided to do this challenge in the warmer month of June to coincide with this year’s Scleroderma Awareness Week.

02

Digital Ulcers

Annual Conference Thanks to everyone who prebooked their places at our Special 30th Anniversary Conference on Saturday 22nd September at the Mercure Hotel in Chester. There are still spaces available and forms will be ready in March. Joining us to give their expert knowledge on the latest research and treatments are Professor Dame Carol Black, Professor Chris Denton, Dr Marina Anderson, Dr Maya Buch, Dr John Pauling, Professor Ariane Herrick, Sister Sue Brown and Sister Louise Parker. Our member speaker this year is Hannah Gray who has had scleroderma since she was a young child. Hannah is now in her third year at Aberdeen University.

Federation of European Scleroderma Associations (FESCA ) Trustee Bev Myers attended the 2nd

and I World

Scleroderma Congress in Madrid from 2nd - 5th February.

This proved to be a most interesting experience. Not only did we gain up to date information on the medical side of the conditions but we also represented the RSA at the FESCA meeting, where we enjoyed talking to people from all over Europe. A report will be in the next issue of Hot News.

RSA Trading Arm Please note that the RSA has a newly registered trading company, namely the RSA Trading Company Limited, which is a wholly owned subsidiary of the Raynaud's & Scleroderma Association. This does not affect you in any way, it is just for our online shop.

In Memory Our funds have been boosted by very generous donations made in lieu of flowers and in memory of loved ones. At such a sad time we are most grateful to relatives and friends who have supported us in this way.

Trustee Thanks Due to pressure of work Mr Kevin Lafferty has recently retired as a Trustee. Mr Lafferty who is a Consultant General and Vascular Surgeon in Essex, has been involved with our charity since the very beginning, helping to organise our inaugural conference in London in 1983. He will be missed by us all for his sense of humour and his invaluable contribution to the Board of Trustees over many years. We send him our sincere thanks and best wishes.

Warmest wishes

Anne

Chief Executive Anne H Mawdsley MBE President Prof. Dame Carol Black DBE Trustees Barry Hicks, Joanna Kaddish Beverley Myers Jeremy Pearson Patrons Sharron Davies MBE Roger Jefcoate CBE Veronica, Lady Piercy Nick Ross David Wilkie MBE

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“As adv pati yea exp do to h to b enc

Medical Advisors Dr. M Anderson Prof. J Belch Sister S Brown Prof. C Denton Prof. A L Herrick Dr. C Lovell Dr. R Macdonald Prof. P Maddison Prof. R Moots Prof. D Scott Prof. A Silman Dr. D Veale

Head Office: 112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.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 that what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.

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Reception House of Commons Reception 1st February 2012 An excerpt from Professor Dame Carol Black’s talk at the Reception Dame Carol Black spoke about the work of the RSA and the service given to patients over 30 years and how the information provided by the organisation has helped many medical professionals.

“As we all know, many people feel passion and determination to help advance understanding of disease and illness and to bring relief to patients. Some establish charities, but few, over such a span year on year, secure more members or more funds to support and everexpanding research programme. There is nothing that Anne would not do to help this cause. Monies raised have been used most importantly to help patients and their carers. The RSA has disseminated information to both patients and healthcare professionals, and patients have been encouraged to become involved in their own care, with support groups

and contacts formed nation-wide, so that the patient’s voice on their needs has been heard.

The charity has championed a much greater understanding of the link between Raynaud’s and scleroderma, with patients being referred by their GPs to specialists at an earlier point in diagnosis, thereby enabling better care. Through the charity’s work patients now have a much better choice of medication. Also of crucial importance has been the RSA’s support for integration of multi-disciplinary care, with development of a network of nurses specialising in scleroderma and Raynaud’s. Anne, I know, would agree with what Gerry Rodnan, the father of scleroderma treatment, said in 1979: ‘May the struggle continue until this most obstinate of diseases is made to give up its secrets.”

An excerpt from Anne’s talk at the Reception “37 years ago I suddenly developed Raynaud’s following a routine varicose vein operation. At that time no help or support was available and there was little interest in the condition. For 7 years I explored every avenue in order to find out more about Raynaud’s.

I had many treatments but still had ulcerated and gangrenous fingers and toes. I had a young family who couldn’t understand the pain I was in and doing any household tasks was agony, especially if my fingers were touched.

30 years ago this month, having discovered a unit at a London hospital where they were treating people with Raynaud’s and carrying out research, I decided to raise funds and create awareness. I contacted the press and appeared on a national television programme. This resulted in hundreds of people contacting me as they also felt isolated.

The need for starting a self help group was obvious and I felt I needed to do something about it. So in 1982 the Raynaud’s Association was founded and the following year we held our inaugural conference in London, attended by patients and doctors. Interest amongst the medical profession started to gain momentum.

Two years later in 1984 I was diagnosed as having scleroderma, which in addition to the excruciatingly painful ulcers on my fingers, was causing difficulty in swallowing and my lungs also became affected. It was a very frightening time as nobody could predict what would happen next. In 1990 the Association changed its name to become the Raynaud’s & Scleroderma Association because of the close link between the two conditions.

My message to all present is to stress the importance of early diagnosis and that timely access to the best evidence-based treatments should be available to all patients, irrespective of postcode or cost.

I would like to thank everyone who has been part of my journey. Without the support of our trustees, patrons, staff, family, friends and everyone involved with the RSA, we would not be celebrating here today. This includes physicians and researchers who are vital to our future progress. My vision is that the Association will continue to grow and develop so that people with Raynaud’s and scleroderma will always have access to help, advice, the best treatments available and above all, hope for the future.”

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Members Kathryn Thomas and Melanie Bowen with Anne and Fiona Bruce at the stand where they talked to MPs and interested parties

Roger Jefcoate CBE, Anne Mawdsley, Baroness Masham of Ilton, Dame Carol Black and David Amess MP (Southend West)

Member Carol Werrett with her MP Anne Milton, Parliamentary Under Secretary of State (Department of Health)

A group of our members who attended the Reception

Trustees Bev Myers (left) and Jo Kaddish (right) joined in the celebration

Tonia Moore, Louise Parker, Sue Brown, Jan Lamb, Liz Wragg and Dame Carol Black

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Doc Spot Your Questions Answered Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free Hospital

My doctor has diagnosed me with Raynaud's. Do I need to see a consultant and if so what kind of consultant?

It is important to clarify whether this is primary or secondary Raynaud’s, the latter associated with underlying diseases such as scleroderma. Most often a rheumatologist is the best person to see as most of the associated diseases are rheumatic, such as lupus or scleroderma. Sometimes vascular surgeons or dermatologists may have a special interest in Raynaud’s.

What is nifedipine?

Nidefipine is in the family of drugs called ‘calcium channel blockers’ that were first used to treat high blood pressure but that may also reduce the frequency or severity of Raynaud’s attacks by reducing blood vessel spasm. Unfortunately there can be some side effects including headache, ankle swelling or low blood pressure.

My daughter who is 10 has just been diagnosed with Raynaud's. Is this likely to get better as she gets older?

Raynaud’s is common and usually is first noticed in teenage years but can occur at any age. Often the symptoms of the most common form, primary Raynaud’s phenomenon, do seem to improve as sufferers get older and this may reflect treatment, adjustment in lifestyle or some of the hormonal changes that occur, especially in adolescence.

How many Raynaud's attacks per day are normal or safe? I am on nifedipine for Raynaud’s (secondary to rheumatoid arthritis). I was getting about 15 attacks per day before going on medication. I still get 2 or 3 attacks per day. Is this safe or should I seek further treatment?

This sounds like a relatively good response to treatment. Raynaud’s attacks in themselves are not dangerous but if you are concerned, there may be additional treatments that could help which work in different ways from nifedipine.

04

My wife who is 63 has suffered from Raynaud's for many years but has never received any treatment. What treatments are available?

Although Raynaud’s cannot be cured it can be treated. As well as simple approaches (avoiding tobacco smoke, cold temperatures and wearing sensible clothing and gloves) hand warmers can be helpful.

Tablet therapies include vitamins and supplements (e.g. ginkgo biloba and others) or prescription drugs that reduce blood vessel spasm such as nifedipine. You should discuss these approaches with your doctor in the first instance and referral to a specialist clinic may be appropriate.

I suffer with Raynaud's and have recently started suffering with numbness in my feet when doing exercise. Why is this?

Raynaud’s may affect the feet as well as the hands and could lead to numbness as you describe. Exercise can worsen Raynaud’s as blood is diverted away from the extremities towards muscles.

Is it usual to get pins and needles worse in one hand more than the other with Raynaud’s?

Raynaud’s often causes numbness or ‘pins and needles’ as the blood supply to the nerves in the fingers is often reduced.

However usually this would be similar in both hands and so it would be sensible to discuss this with your doctor in case any other cause is present such as carpal tunnel syndrome.

Ginseng has been recommended to me for hypothyroid. Might this also help Raynaud's?

A number of vitamins and health supplements do seem to alleviate Raynaud’s although a cure is unlikely. Some patients have reported benefit with ginseng and other approaches include anti-oxidant vitamins, fish oils and ginkgo biloba. I always suggest trying these approaches for 4 to 6 weeks to see if the Raynaud’s improves.

I always get really blocked sinuses and have had problems with taking decongestants as they make my Raynaud’s worse. Some of the tablets do say take with caution if you have Raynaud’s so I avoid those. However, I have also noticed that some don’t put it on their leaflet and they have the exact same ingredients as those that do. I have recently tried a nasal spray but again it says nothing on the leaflet but I have noticed my Raynaud’s has been worse. It could be that it has been particularly windy or chilly but I don’t think it is a coincidence. What are the specific ingredients in these medicines that make Raynaud’s worse?

Decongestants often contain drugs such as ephedrine that reduce blood supply to the inflamed tissues in the nose but these drugs may be absorbed from the nose and aggravate blood vessel spasm in Raynaud’s.

I have developed Raynaud’s since being on chemotherapy drugs. Is this unusual?

Some of the powerful drugs that are used as chemotherapy for cancer can cause or aggravate Raynaud’s, possibly due to damage that can occur to the lining cells of blood vessels. Fortunately, this often improves once the chemotherapy has been completed and in general most specialists give priority to treating or preventing the cancer.

Are ingrown toenails associated with Raynaud’s?

I am not aware of any association – but both conditions are common and so could occur together.

Over the past 6 months or so I've noticed that my fingers have become progressively more and more red, swollen and sensitive. Is this typical of Raynaud’s?

Raynaud’s can lead to swelling and redness of the fingers, usually as part of an attack. If it is persistent then it is possible that there is inflammation of the skin or joints that may reflect an associated rheumatic condition and this should be investigated by your doctor.

Do people with Raynaud's take longer to heal from injuries?

The reduced blood supply to extremities can slow healing although associated conditions such as scleroderma may be more important in this regard.

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Doc Spot Does vitamin E helps with Raynaud's and if so what dose should I take?

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Vitamin E is one of the nutrients that acts as an antioxidant and some studies suggest that low levels of this and other natural antioxidants are lower in scleroderma and so it is often worthwhile taking supplements at usual recommended doses – for Vitamin E this would be 200-400mg daily.

Why are erythromelalgia and Raynaud’s connected when they appear to show opposite symptoms?

Erythromelalgia is a medical condition in which blood vessels dilate and lead to burning red discomfort and intolerance of warm environments. This can occur after a Raynaud’s attack in some cases and both disorders are due to excessive response of the regulatory blood vessels to change in temperature.

Is there any correlation between Anti Nuclear Antibody (ANA) levels and the progress or severity of the disease?

Secondary Raynaud’s with an associated connective tissue disease generally has a positive ANA test but the level of antibody in the blood does not appear to reflect progress or severity. The specific subtype of ANA may be more relevant and this is often tested as part of the investigation of new cases of Raynaud’s phenomenon.

I am suffering from faecal incontinence due to weakness of anal sphincter muscles. Is there any treatment for this?

Many patients with scleroderma develop this pattern of weakness that can make bowel control difficult. Approaches that have helped some patients include injection of ‘fillers’ to augment the sphincter muscle or electrical nerve stimulators, but these are very specialist approaches that need an expert surgeon. It is important to exclude other causes such as damage to the sphincter from childbirth in women and this is why specialist assessment is recommended.

I have gum disease from scleroderma. What can be done to help relieve this?

Unfortunately scleroderma is associated with gum disease due to thinning of the tissues around the teeth and mouth and also because the quality and amount of saliva is often diminished in scleroderma.

Good routine dental care is important but this is a difficult complication to treat. Sugarfree chewing gum can be helpful in stimulating saliva.

I was diagnosed with scleroderma in 1991 and have many symptoms including Raynaud's and gut problems. I have been having dilatations of the oesophagus regularly for many years but last January I had a dissolvable stent fitted where the stricture is. It has changed my life and enabled me to go out to eat and to eat most things. I also take Domperidone. What are the most effective medications for Acid Reflux?

Almost all patients with scleroderma suffer from heartburn and reflux symptoms. The inflammation of the oeophagus may result in scarring or a stricture. This is much less common that in the past as drugs that suppress acid, such as omeprazole, are very effective. Dilatation and related procedures as you describe can be very effective but must be followed by full treatment to suppress acid (such as omeprazole) and improve motility (e.g. domperidone) to reduce the likelihood of recurrence.

The most consistently effective drugs are those in a class called ‘proton pump inhibitors’. These reduce stomach acid and help reflux but higher doses than normal may be required.

NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore

020 7472 6354

Royal Free

(For Pulmonary Hypertension Enquiries)

Specialist Nurses

020 7830 2326

Royal Free Sue Brown

01225 428 823

Bath Liz Wragg

0161 206 0192

Manchester Specialist Nurse

0113 3923 035

Leeds Jan Lamb

0151 529 3034

Liverpool Karen Walker

Newcastle upon Tyne I have had ulcers on my ankles and feet for the last ten years. I have had skin grafts in hospital and tried all sorts of dressings but cannot get them to heal. Please can you suggest anything that might help?

Ulcers around the lower legs or ankles are quite common and may reflect poor blood supply due to abnormal veins or damaged arteries. In addition, some of the rheumatic diseases that are associated with Raynaud’s can also lead to ulceration.

These aspects need to be checked by your doctors. Drugs that improve blood supply such as iloprost (via a drip) may be useful and it is important to treat infection and sometimes to suppress the immune system if there is associated scleroderma or a related disease.

Does putting on weight ease Raynaud’s?

I've had Raynaud’s most of my life - recently someone said I might not have such cold hands if I was heavier? I am not exactly size 0, but rather on the thin side. I don't want to be fat but if I thought it would help I would try to put on some weight.

It is important to eat a good and balanced diet to avoid deficiency of minerals and vitamins that might aggravate Raynaud’s, but putting on weight is not advised.

Patients who are underweight may develop Raynaud’s since there is less fat to insulate the body from cold that may trigger Raynaud’s attacks.

0191 223 1503

Audrey Hamilton Belfast

02890 561 310

Paula White & Julie Ingall Portsmouth

02392 286 935

Jayne McDermott Sheffield

0114 2711 627

Lucy Pigram Brompton

077588 943 175

(For Lung Enquiries)

Steve McSwiggan Dundee

01382 633 957

(Only available Mon, Tues & Wed mornings)

The nurse advice lines 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 and therefore on occasions you will get an answerphone to leave your details for the nurse to get back to you when available. The advice lines are not intended for use in an emergency.

If you have a question you would like Professor Chris Denton to answer, please send to Head Office 05

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Medical News Salford Royal News A report on two grants provided by the Raynaud’s & Scleroderma Association undergoing analysis.

Dr Andrea Murray, Graham Dinsdale and Tonia Moore with the equipment recently donated by the RSA

The first grant was to fund a study of telangiectases (small but highly visible blood vessels that can appear in clusters in the skin of the face and limbs) entitled ‘Cutaneous telangiectases in systemic sclerosis – impact on body image, and efficacy of laser versus intense pulsed light (IPL) treatment’. This programme of work involved two parts. The first part was a questionnaire to assess body image dissatisfaction in relation to scleroderma (systemic sclerosis)-related telangiectases.

One hundred and forty one patients with scleroderma, who attend the scleroderma clinic at Salford Royal Hospital, responded to the survey. Body image dissatisfaction was higher in patients with telangiectases than in those without. Analysis revealed four themes: changes in behaviour as a result of telangiectases (e.g. social avoidance), public and private self-image (e.g. feeling selfconscious), negative emotional impact of telangiectases (e.g. feelings of sadness or anger) and gaining new perspectives on life (e.g. focusing on positives such as the ability to walk).

This research has provided new insights into the thoughts and feelings of patients with telangiectases. It has highlighted concerns and also methods of coping with telangiectases. The results of the study suggest that individual coping strategies and the role of family and friends may play an instrumental role in scleroderma-related body image dissatisfaction.

The second part of this study was a clinical trial examining two light based treatments for scleroderma-related telangiectases (laser and intense pulsed light [IPL]). Patients received both treatments; one to either side of the body on 3 occasions.

Photographs and images of blood flow (using a technique called laser Doppler imaging, Figure 1) of the treatment sites were taken before each treatment in order to monitor progress. A reduction in blood flow indicates successful treatment. Seventeen patients completed the study and 3 received partial treatment.

Photographs have now been assessed and measurements of blood flow have been calculated. This data is currently

final

statistical

The second grant has recently been awarded to purchase a high frequency ultrasound (HFUS) system to allow us to measure skin thickness. Skin thickness is an important aspect of scleroderma and is one of the key indicators of the extent of the disease. HFUS offers high resolution, (meaning very detailed) imaging of the structure of skin, allowing visualization of Figure 1: A laser Doppler image skin layers (Figure 2). Sound showing blood flow on the back of a hand. Telangiectases waves enter the skin and are (highlighted with white arrows) reflected back towards the can be seen as small circular surface when they reach areas of increased blood flow. Red represents high blood flow, blue boundaries within the skin such relatively low blood flow. as the junction between the epidermis and dermis (two ‘layers’ of the skin). This signal is then displayed as an image with brighter areas representing strong signal reflection. We have had a HFUS system on loan and have used it successfully in several studies; however, we are very grateful to the Raynaud’s & Scleroderma Association for allowing us to purchase a system allowing us to integrate HFUS measurements into our longer term studies examining changes over time.

We plan to use the HFUS system in both our ongoing studies and in a number of future studies, including studies of telangiectases, of calcinosis and of skin changes in children with localised scleroderma (morphoea).

Understanding more about these different aspects of scleroderma will allow us to understand more about disease progression and may allow us to develop HFUS as a marker of disease severity and progression for integration into clinical services in the future.

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Thanks to GSK, who have kindly supported the publication costs for this issue of Hot News GSK have no editorial input or review of the content of this newsletter and the opinions expressed are the opinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of GSK

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Digital Ulcers New Digital Ulcer Leaflet What is a digital ulcer?

A digital ulcer is a break in the skin. Digital ulcers in people with scleroderma most commonly occur at the tip of the finger, sometimes extending underneath the finger nail, or over the finger joints. They can be extremely painful and can become infected, mainly due to the poor circulation and poor healing capacity. This makes daily activities very problematic.

Ulcers normally appear due to a combination of poor blood flow as a result of vascular damage caused by the scleroderma (with periods of deoxygenation of the tissue caused by Raynaud's attacks) and the skin changes of scleroderma. They may be triggered by trauma to the digit. They may also develop over areas of calcinosis (calcium deposits).

Digital ulcers should not occur in primary Raynaud's. However, in secondary Raynaud's when associated with scleroderma, repeated episodes of reduced blood flow to the fingers can cause tissue damage at the finger tips with pitted fingertip scars, and in some people ulcers.

Typical signs of infection include much more pain, redness and heat. At this point it is important to see your GP or specialist nurse to be assessed as you may need to start on antibiotics to try and stop the infection from getting any worse.

Where do ulcers develop?

Finger ulcers tend to occur at two main places: (1) at the fingertips and (2) over what are termed the interphalangeal joints (the small joints of the fingers).

The ulcers over joints occur especially in people who have contractures of their fingers – a finger contracture means that the finger is bent because of scleroderma and cannot fully straighten.

A pressure point therefore develops over the joint and the skin can break down to form an ulcer.

Ulcers of the toes are less common, but can also be a big problem. It is important to prevent toe ulcers happening in the first place by being very careful with the feet, for example not wearing shoes which might rub and cause an ulcer. A chiropodist (podiatrist) will be able to advise on footwear. If you have ulcerations to the feet make sure that your podiatrist is aware that you have a diagnosis of Raynaud’s and scleroderma.

Calcinosis In people with calcinosis, ulcers can be caused by calcium deposits breaking through the surface of the skin. These ulcers can be extremely painful and difficult to heal. Calcinosis tends to occur at pressure points, and so calcinosis-related ulcers can occur not only at the fingers but at other places, for example the elbows and knees.

Treatment of digital ulcers There are several different aspects to the treatment of digital ulcers. Many ulcers are infected, and treating the infection will then help the ulcer to heal. Ulcers are very painful, so strong painkillers are often required. Local wound care by skilled nurses is also very important. A key part of treatment is to improve blood flow to the fingers (or toes) to maximise chances of healing. One way to do this is to give intravenous (into a vein) infusions of a drug called iloprost. Iloprost works by widening the blood vessels and although unlicensed in the UK is often used by doctors.

Because it is given intravenously it requires hospital admission.

There is no single way of treating a digital ulcer. Signs of infection need to be assessed very carefully because infections can be very

problematic. Doctors and nurses can take swabs and send them to the laboratory to find out what type of bugs are potentially worsening the situation. If there are signs of infection, seek treatment immediately.

Oral or intravenous antibiotics are often recommended. One antibiotic which is often recommended is flucloxacillin. If the ulcer doesn’t improve a second course may be needed. In more severe cases, intravenous antibiotics may need to be prescribed.

Intravenous iloprost may be beneficial for some people with ulcers. However, it may cause unpleasant side effects such as nausea, headaches, flushing of the face, or a drop in blood pressure. Iloprost helps to relax the blood vessels and increase the blood flow and reduces the stickiness in the blood.

Surgery is sometimes required, although this is only in the minority of cases. There may be a small collection of pus, or some damaged tissue, which needs to be removed by a procedure called ‘debridement’ which essentially means ‘cleaning up’ the ulcer. Very rarely more complex surgery is required. When there is an area of calcinosis underlying the ulcer it may be necessary to remove some of the calcinosis.

It is important to emphasise again the importance of early treatment. Sometimes infection in digital ulcers can spread to involve the underlying bone (this is called osteomyelitis), and the earlier treatment is given, the less likely this is to happen.

Osteomyelitis can be difficult to diagnose. If your doctor is not sure if the bone is infected s/he may arrange a magnetic resonance (MR) scan which can help to demonstrate bone infection.

Prevention If you are prone to developing ulcers, care should be taken to maintain good circulation by keeping your hands and feet warm.

Try to reduce exposure to water for example by using a dishwasher if possible. Use soap substitutes such as aqueous cream and ensure that you moisturise your hands every time you put them in water. It is also important not to manicure your cuticles as this might cause damage and lead to ulceration.

Your doctor will probably recommend medication to improve blood flow, with the aim not only of helping the Raynaud’s but also of reducing the likelihood of ulcers. Drugs called calcium channel blockers (for example nifedipine) are often recommended but there are many others. Bosentan is indicated to reduce the number of new digital ulcers in patients with systemic sclerosis and ongoing digital ulcer disease. Sildenafil, although unlicensed for treatment of digital ulcers, may also be helpful for people with severe finger problems.

Tips • Don’t fiddle with an ulcer! It can last for months or even years but if you leave it alone it will heal more quickly.

• Keep the area around the ulcer clean.

• Try not to touch any area of broken skin because you could run the risk of further infection.

• See a nurse or rheumatologist if you think it looks or feels infected, as you are at risk of a spread of the infection.

The key point is that if you have an ulcer you should seek medical advice as soon as possible. This is so that effective treatment can be commenced without delay.

This information is taken from the RSA’s Digital Ulcer leaflet.

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Kathryn’s story I was just a normal twelve year old I was just a normal twelve year old, going created a distance between me and the girls I was previously to school, spending time with my family, friends with. At that time they were not being very kind and I felt playing with friends, talking too much at confused and unhappy. I eventually changed schools and although school and not wanting to do I still felt a bit embarrassed about the way I looked and the things I homework! Then I started to realise that found hard to do, I made some really great friends.

I got very cold hands during play times About a year after I was diagnosed with Raynaud’s and and found them stinging when going scleroderma, doctors at the Royal Free mentioned a new treatment Kathryn back into the classroom. Being a kid I called iloprost that they hoped was going to be a great help to didn’t really realise that they looked anything other than normal at sufferers. It worked by opening up or dilating the blood vessels and that time. To help with the cold, somebody, probably my Dad as he therefore helping the body’s circulation. This would mean going tends to like a charity shop or two, bought me some lovely into hospital for 5 days to have the treatment through a drip, sheepskin mittens, the only thing was that they were men’s size! So something I didn’t really relish at the time. As I was still only 14, I was as you can imagine that earned me the nickname of 'Oven Gloves'! admitted onto a children’s ward. Once there I was amazed, and a At this time I started to get what I called sores under my fingernails, little shocked, to find out that I was strongly encouraged to attend but now I obviously know them to be ulcers. I the ‘school’ on the ward. No week off for me found it very hard to express the pain that they I started to realise that I got very then! Looking back now I can see the clear caused me, especially when banging them or benefits to my circulation, ulcers and general cold hands during play times picking them (as kids do). They would often health that the treatment had. make me cry and I found this hard and a bit Within the first 5 years of my illness I had great weird to be honest. difficulties with swallowing and digesting my food. I often got my My GP was a bit flummoxed by it all and I got referred to my local food stuck in my throat, sometimes bringing it back up and I had hospital for tests. Unfortunately, I had been referred to the vascular terrible indigestion at night. After trying a few different treatments I department and the consultants had no answers. I was then invited found one that really helped me and eased my problems. I had to to a seminar where lots of physicians gathered together. Whilst have a procedure that stretched my oesophagus as there would there someone mentioned scleroderma and I was referred to the sometimes be a narrowing which added to my problems. I had the Royal Free Hospital. When arriving there I remember thinking it procedure a few times over those first 5 or 8 years but at the time I looked like a block of flats but little did I know how important this didn’t mind too much. This was mostly because I would usually get place and the people in it would become in my life. a treat on the way home. The treat was going to McDonalds as after My first appointment at the Royal Free was with Dr Carol Black who the dilatation I was able to swallow the burger, something that even immediately diagnosed my problems. She said I would need to go now I remember being delighted about! into hospital for treatment and lots of tests to see how the condition During this time, I tried to carry on as a normal teenager, going out was affecting me. She gave us medical information about with my friends, having great holidays with my family, arguing with Raynaud’s and scleroderma and explained what the possible my sister and enjoying my new school and activities there. Holidays prognosis may be. As I was fairly young I didn’t really take much were, and still are, one of my favourite things. I was lucky enough to notice of any of the things she told me. I’m sure my Mum did and go on lovely holidays with my sister and parents and the thing I only now, looking back, I realise how scary and worrying it must always enjoyed most was swimming, both in the pool and in the have been for her and my Dad. All I was really concerned about was sea. Ulcers sometimes became a problem but I realised that by that the skin biopsy that I had on my leg and my back hurt like having a lilo I could just lay my hands on it and not have to get them crazy! in the water, so nothing stopped me. There were often things that I Within a month I was admitted for tests including x-rays, scans, lung had to think about, such as getting sand in the sores on my feet or function tests, blood tests etc. Decisions were made on what hands, feeling cold even when the sun was shining and if there was medication I needed - mainly steroids and immuno-suppressants. a slight breeze, sitting around on the beach was uncomfortable.

The main thing I remember at that stage was the fat face that I I was transferred onto the adult ward at the Royal Free when I was developed thanks to the steroids. I didn’t feel that the medication 16. On my first admission up on the 10th floor, I met a girl who was helped the ulcers on my fingers much but my about 4 years older than me, called Sally. She muscle and joint pain did feel a lot better. My had Raynaud’s and was in for iloprost as well.

I had to have a procedure that skin continued to get tighter and I had to We hit it off straight away and had such fun. adapt ways that I did things such as getting stretched my oesophagus We would lie on each other’s bed watching dressed and doing up buttons, washing, the television, which at that point was brought combing my hair etc. on poles to the end of our bed. We chatted non-stop and had great fun, racing with our drip stands down the At this point I was starting secondary school, a much bigger and scarier prospect than my small, friendly middle school. This was an corridors. Looking back I feel sorry for the nurses! extremely hard time for me and didn’t really help my illness very Sally and I kept in touch with letters and visits to each other’s homes much. I felt I was different from anyone else my age and I was very and were lucky enough to be able to arrange to be in hospital for self-conscious of how I looked and how my skin was making my treatment at the same time. One year we even arranged to be in looks change. I found it hard to be part of a group and always felt there over New Year. The nurses were great and we all gathered in like an outsider as the friends I had from middle school all seemed one of the wards, wheeling some people in chairs and even on to be getting more confident and I was getting less. This wasn’t beds. I seem to remember having something sparkly to drink but I’d helped by the things I found I was unable to do such as sitting on better not admit to that! Having Sally there definitely made the the floor for assembly. It seems such a silly thing now but I had to admissions easier but I do have to say that I have always been so sit at the end of the row on a chair as my tight skin stopped me from lucky with the people I have met when in for treatment and often find being flexible enough to get on and off the floor. Cookery and PE it does me a lot of good to catch up with other people who share lessons proved a problem and made me stand out as different. This some of the same problems.

08

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Kathryn’s story At that time I was still being admitted 3 times a year for iloprost so I On leaving university I wasn’t too sure what I wanted to do for a did miss some school but nothing that seemed to cause too much career. I applied for two trainee positions in social work and of a problem. I was having a lot of trouble with cannulas because of probation, as they had always been of interest. I went to several my tight skin and the effects of Raynaud’s on my veins. Eventually interviews, group activities and presentations but was unfortunately I had a Hickman Line put in as a permanent line in my chest. It was not successful. I continued with my iloprost treatment throughout great as it could be used for blood tests, however, swimming was a this time and I think to date I have had between 20 and 30 infusions. problem. Luckily I managed to get some help from, believe it or not, Things seemed to be quite stable but my breathing had become the the stoma nurse. She gave me stick-on bags that kept the line fairly biggest problem for me. However, I got myself a few temporary jobs dry and actually worked fairly well. that kept me going and eventually, through a friend, started work in Towards the end of secondary school was GCSE time, all went well a local women’s prison! No...not as a prison guard but in the offices. and although I ended up opening my results surrounded by nurses Not quite probation but I felt it was a foot in the door. and other patients in the Royal Free, luckily I did okay. After the I worked with great people who helped with things I found difficult exams I got the chance to go on a cruise with the school which took such as filing and carrying heavy files. I was never penalised for time us to Crete, Egypt, Israel and Turkey. I was so excited as I had that I had to have off for hospital appointments and treatment, which always wanted to see the pyramids. Looking back I guess it must was a great thing as that can cause a lot of stress for some people. have been worrying for my parents to have me going away like that There were some parts of the job that weren’t too easy such as but I am pleased I went and saw many amazing things and different having to unlock so many doors and gates, as they were often stiff ways of life. The memories have stayed with and the doors very heavy but I learnt to me vividly. manage and always wore gloves (not my I went and saw many amazing As my teenage years progressed I made my things and different ways of life. oven gloves!) when it was chilly. I had also started to have problems with ulcers on my way to 6th form college for A levels. I enjoyed The memories have stayed toes, some lasting around 6 months. I that part of my life and have to say that I didn’t with me vividly remember getting a pair of trainers and do too much to help my conditions over those asking to cut a hole in the toe. Not quite the few years. I know now that things like physiotherapy and exercises (especially for my hands) would have probably been a help but at look I was going for but it worked wonders. that time other things seemed more important such as going out, Throughout my time working at the prison I had recurrent problems clubs and of course boys! with my lungs. They would just collapse spontaneously and I would The idea of a boyfriend was always on my mind but I had enough usually end up having a chest drain to remove the air inside my friends not to worry too much. I was comfortable with my friends at chest wall. Although these were difficult times which caused me that time and the thought of getting close to someone else, problems, I got very good at identifying the pain and would get especially a boy, seemed like a big thing. However, I grew a bit in myself to hospital for help. confidence and especially with the help of my first Saturday job, I Around 3 years after starting at the prison my breathing had again gained the courage to give it a go. I don’t think things were made worsened and the Brompton was worried that my lung function was any easier by the scleroderma and wondering, would he think my deteriorating. I was referred to Harefield Hospital to be assessed for hands were horrible, would he want to hold them or even hold me? a lung transplant. This was a massive shock to me and to my I needn’t have worried though as I enjoyed my first relationship and parents. After 4 days of various tests I was shocked when the enjoyed the freedom that came with it. A great part of this added consultant told me that it would be a good idea for me to go on the freedom came from the fact that I learnt to drive and had a car. It active waiting list. I felt I was so much healthier than other patients was automatic of course because it was easier with my hands. I I had seen around the hospital even if my results were so low. I went went out a lot more and experienced new things and at one point home from that appointment to consider my decision and in the end as well as working in a chemist on Saturdays, I also worked after I went along with the advice of the doctors, as I have always done. college each night cleaning a local school. I remember at times I had to tell them at work in case I was suddenly called in. feeling quite tired and not really thinking why that might be. I worked at the prison for over 9 years and the group of women I Nevertheless no one could stop me, least of all my parents! worked with gave me great friendship and support. I also met a guy Three years later and well into clubbing, drinking and partying I working there and 4 years later we got married. Any bride has lots surprisingly got enough A levels to be able to go to university. It of worries leading up to the wedding day but I had strange worries must have been a worrying prospect for my parents as I would be such as would I start coughing during the service, would my sore living away from home but I remember that toe be okay in my new shoes? they encouraged me to go.

I had developed bad calcinosis on I was also worried about my horrible arms. I At university I pretty much just remember had developed bad calcinosis on the lower the lower parts of my arms and doing as I wanted, although more forward they often looked red and quite raw parts of my arms and they often looked red planning was sometimes needed and some and quite raw. I looked at dresses with things did cause a bit of worry. Even silly sleeves but in the end, after being persuaded things like the door locks on the flats that I lived in. I found it hard to by a few people, I decided that everyone who was going to be at grip and twist the lock but where there was a will I found a way. I the wedding cared about me and not how I looked. In the end it was wasn’t going to let that beat me. a good job I didn’t worry as it was a baking hot day. It was the men At this point I began to realise that I was getting more out of breath in their suits that I felt sorry for. I also worried about whether my when walking around and doing my normal day to day activities. I husband would be able to get the ring on my finger, so I ended up had lung function tests which led to my being referred to the Royal getting two rings blessed and using a large one in the church and Brompton Hospital. They did more tests and put me on some swapping it over later on, just to make it easier. The day was different medication. A while later, I was admitted for a more wonderful. aggressive treatment to help stabilise my condition.

I had some problems dealing with the guilt of not being what I During my 3 years at university I did many things that the hospital perceived to be a ‘good wife’. I got worn out doing the housework and doctors would probably have advised against - drinking, late and always had to have my husband’s help with things like cooking nights, getting cold, queuing outside clubs - you know what I mean! and washing up. Very old fashioned I know and looking back now I don’t know why I worried.

I loved university and thrived on the independence it gave me.

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Members’ Stories Kathryn’s story continued...

All this time I was on the transplant waiting list and had not received a call. Again I found myself sitting in front of the consultant who advised that I came off the transplant list because of other complicating factors with my case such as reflux and digestion problems. He said it was unlikely that I would be put back on the list. I have to say at the time I selfishly didn’t think how this was affecting my parents and my husband. I think my parents were quietly relieved but my husband, well, that was another matter. He was ever the optimist and I think he felt that the operation would be the answer to all my problems. When that possibility went, he became very concerned for our future. A year later he told me that he no longer wanted to be with me. I was completely devastated.

I do not blame the transplant issues but I do feel that it had put an extra strain on our marriage. The break up didn’t do my health much good. I lost weight, had bad Raynaud’s because of the stress and I got quite depressed.

However, at the time my friend was spending six months staying with her family out in New Zealand and after managing to organise time off work, a small loan from my parents and oxygen on the plane, I set off for a month to visit her. I had a great time and came back really refreshed and with a much better perspective on life.

Luckily for me my friend came home two months later and we decided to share a flat.

In the past couple of years, I have had a few medical problems the main one being growth of calcium at the top of my leg, causing trouble sitting comfortably. Weight loss is also a huge problem for me at the moment. I am down to around 6 stone and am desperately trying to put on a stone. I know this sounds annoying to those people who are trying to lose weight, but the weight issue isn’t helping my lung problem. Since having a collapsed lung, I now need to use oxygen a lot more when walking. I had to reduce my working week and have agreed to ill health retirement.

Although sad that I have had to leave the prison and my work mates, I do feel it is the right thing for me and I am looking forward to using the energy I have, when I have it, for the things I really enjoy. I am thinking of doing some voluntary work or even studying.

I have met a lovely new man and we are planning to move in together in the next few months so who knows what the future holds? All I do know is that however hard things sometimes seem, I try to keep it all in perspective. Usually if one new problem comes up then an old one often settles down. There are good days and bad days but as long as you make the most of the good ones and have friends and family there to support you, then you will be okay.

The RSA has always been there as a source of support and information and to them I say a massive thank you I could not have managed to get through all that I have done without the unconditional love, support, help and kindness of my Mum and Dad. You are both my heroes and I love you. Thank you for everything. Also the RSA has always been there as a source of support and information and to them I say a massive thank you and I hope that they carry on helping lots of people like you and me.

Living life the best I can I came in from the cold, shut the door and shivered as I took my gloves off. It was the same every winter. While other people warmed up once they were indoors, I was the one still trembling with cold. My fingers wouldn’t come back to life for hours.

Friends would say it’s just bad circulation but as each winter passed, my hands got worse. They were freezing all the time even in summer. My husband Bill was often away with the RAF and I was at home with our young son Jason.

It was becoming harder to help him do his laces up or button his coat.

Pam King

Finally, when Jason was 8, I was referred to hospital. By now my fingers were frozen all the time. They gave me a diagnosis of Raynaud’s Disease. It was a disorder of the blood vessels, making the vessels narrow so blood couldn’t reach the extremities. ‘So that’s why I’ve always had cold hands,’ I said.

For the next two years I kept warm, wearing gloves and thick socks, but my fingers were getting worse. Soon I had no feeling in two fingers on my left hand. I saw my consultant and it was bad news. The ends had become gangrenous and he said “They’ll have to be amputated”. I had the ends of my index and middle fingers removed. Afterwards I had to re-learn everything from making a cup of tea to opening a jar.

Years elapsed and our son Jason left home. In my 50s, I started having trouble breathing. I saw my consultant for Raynaud’s as usual and he ran tests. “You have scleroderma” he said. He explained that scleroderma meant ‘hard skin’ but it also meant that blood supply was not reaching other places in my body, including my internal organs, and now it was affecting my lungs and breathing. I went home, shocked. Raynaud’s was hard enough but now I had a whole new illness to contend with.

As months passed, it affected my lungs, liver, even my bowels. I had to have regular vascular dilations to help the blood circulate.

I was refered to a cardiologist, a liver specialist and my Raynaud’s specialist.

Then in 2008, my husband Bill died of cancer. Bill had helped me with the things I could no longer do and now I had to manage alone. I bought gadgets – special bottle and jar openers, plugs with handles to pull them out easier, but life was hard. I’d wear woollen gloves all the time and still feel bitterly cold. A year ago, I got an infection in a cut in another finger on my right hand. I lost sensation and knew all too well what this meant. Another finger...I thought. I was right. The blood supply didn’t reach my finger, so could not fight the infection. The finger needed amputating, this time to my knuckle. Now I am living life the best I can. Despite losing some fingers, I can still drive, get out and about and cook.

I’m telling my story to raise awareness of Raynaud’s and scleroderma. I hope this give encouragement to others with the condition knowling that, although it has taken my fingers, I am still living a life I enjoy.

Kathryn Thomas

Pam King

The above has been taken from a very moving talk given by Kathryn at our Annual Conference in September 2011.

This article was written by freelance journalist Julie Cook and pubished in Take a Break Magazine .

10

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Members’ Stories My Raynaud’s journey Let me take you on a journey – a personal journey. Some parts of my travels will already be familiar to you where others differ. It is when we reach a crossroads that we have to be careful to choose the correct path. I’ve never been known for my sense of direction!

The first step, for me, was the sight of my fingers becoming white and turning numb, especially when it was cold. I put Janette Bond on some warm gloves and carried on up the path. As I progressed my fingers turned blue and became very painful. My toes began to show similar symptoms. It was at this point I should have sought medical help but I was too busy at work and carried on.

About a year later I noticed that this condition was worsening.

When my feet became blue, I at last decided to visit my GP. Things happened very quickly then. After examination he wrote a long letter, thrust it into my hand and sent me straight to hospital. Within hours I was admitted and found myself on an operating table. An artery in my leg had become diseased and a clot had formed. I’m still here thanks to the quick thinking of my GP. While in hospital, abnormalities were found with my blood. I was sent to another hospital, eighty miles from my home, where I would receive specialist treatment. It was there I was diagnosed with Primary Raynaud’s and put on a course of Adalat Retard. Things became much better.

Six years after my initial diagnosis, I developed peritonitis.

Afterwards my Raynaud’s became much worse. After consultations and many tests it was deemed that I now had secondary Raynaud’s as well as symptoms of other connective tissue disorders.

Two years later I suffered my first severe Raynaud’s attack. I woke up in the middle of the night, my right side completely frozen and unable to move. Very frightening but I managed to massage some feeling into my limbs in order to reach the phone and call for help. I dicovered that my immune system was now attacking the bones in

my body and was very active in my right side. Medication was increased and hospital appointments became more frequent. I was back at work but had to attend Occupational Health as some adjustments had to be made for me. It was sometimes hard-going, especially in winter or if the heating system at work broke down.

Eighteen months later I had another severe attack. This time I was off work for a year. During this time I tried most of the immunosuppressants available but the side effects were worse than the pain. Mobility too, became a problem. I still have difficulty walking or standing for long periods. Eventually I had to take ill health retirement.

This was one of the darkest periods of my life. I was a primary school teacher. I loved my job. It was all gone. My GP was worried I would fall into depression. She made me look at what I could still do, not what I had lost. She encouraged me to write a children’s novel which I did, and have now written a second. I had them published and it was amazing to see my own name on the cover of a book.

It is important to keep positive and try not to focus on what you can’t do. A friend of mine said to me I was beginning a new chapter of my life and she was correct. I’m doing things I would not have been able to do if I’d still been working, but it’s not always easy. You learn to cope. You wear gloves and thick woolly socks on days other people are in T-shirts. You avoid supermarket shopping where the artificial lights give you headaches or the freezer aisles give you pain. There are days when the pain is so severe or chronic fatigue leaves you without enough energy to get dressed in the morning. I call these my ‘bad’ days. If I have to stay in bed, so be it - tomorrow will be better.

Living with a mixed connective tissue disorder can be difficult and frustrating. Support from family, friends and GPs is necessary, but most of all you need to learn to give yourself inner support. Take the positive path at the crossroads, seek help when you need it, enjoy what you are still able to do.

Janette Bond

The frozen food aisle is a nightmare I had to push my GP for a Emma Major, 33, is a martial blood test. It confirmed I arts enthusiast. But her real had Raynaud’s and it foe is cold weather, particularly was a symptom of limited temperature changes. Emma, cutaneous systemic sclerosis. a legal executive, from Ripon The rheumatologist I was in North Yorkshire explains: referred to told me I must “About three years ago I started protect my fingers or risk to notice that my fingers would ulcers and serious damage. sometimes go numb. I didn’t Emma Major think too much about it at first, I do everything I can to avoid but it started happening more getting cold. Stress can also and more often, even when it wasn’t cold. set off the Raynaud’s and working out in the Going into a supermarket sets it off, gym helps with that, although I have to wear especially if I am buying frozen foods. It a fleece and gloves. I sit next to the heater makes it difficult to get a key in a lock or at work and as soon as I get home in winter pick things up, but the worst part is the I have a warm drink and hot bath. I wear pain. My fingers may look and feel numb on special gloves with silver fibre under my the outside, but on the inside they hurt so ordinary gloves when I go out to keep my much that sometimes I end up crying with fingers warm.” the pain. The pins and needles when they thaw out is a relief, because I know the The above piece was taken from Take A worst is over.

Break Magazine Winter Issue

Help please in Warrington We have been invited to have a stand at the Annual Lupus UK Awareness Day on Sunday May 20th 2012 at The Halliwell Jones Stadium (Warrington Wolves Rugby Football Club), Winwick Rd. Warrington WA2 7NE. The meeting starts at 10.15 and finishes at 3.30 (buffet lunch included!)

If any local members would be interested in volunteering to man the stand for us we would provide all the literature. As you may know many people with lupus also have Raynaud’s and this would be a good opportunity to raise awareness of the RSA. Do give us a call as soon as possible if you are able to help.

Postage Please check when sending any packages to us that you have paid the correct postage as we have received several underpaid packages for which we have had to pay the additional cost.

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Fundraising Tea Party

Annual Draw Raises £9,000

Iris McMillan, together with husband Ron, organised a tea party at which Iris sold her very attractive quilted items. As a result a total of £230 was raised plus an additional £279 from the sale of RSA Christmas cards. Thank you both for your efforts.

Tea and Cakes for Cyclists

Exercise Group

Debbie Pentland’s exercise group raised £50 from their Percy boxes, card sales and a session on the beach. Thanks Debbie for organising this and for your time in giving the session.

Anne with Fiona Bruce MP who kindly called into the RSA office to draw out the winning tickets for the Annual Draw, which raised £9,000 towards the Cool Million Appeal.

Open Garden

Christmas Fayre Brenda Holden held a Christmas Fayre in her village of Eastham, Wirral and together with other donations, sent us a cheque for £170.20. Thank you Brenda for your continued support.

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Cardiff Half Marathon Eileen Pott sent £301 towards the Cool Million. This was made up by making and selling her cards together with funds raised

by Timothy Jordan who took part in the Cardiff Half Marathon.

Jan Thompson sent us this photograph of her daughter Penny and partner Gary Waite who took part in the 30 mile NATS cycle ride in the Lincolnshire Wolds. Jan baked tea and cakes for the cyclists and raised £50 for the Cool Million.

Piano Practice Wendy Liddle, whose sister Hazel is a member of the RSA, kindly sent £125 raised by opening her garden with the National Garden Scheme. Thank you Wendy!

Our thanks to Lin Ford who organised a sponsored piano practice for her pupils and raised a wonderful £784.50.

Three Peaks Challenge Many thanks to Mathew Webb for his efforts in raising a staggering £1,063 on the Three Peaks Challenge. The top photo was taken just before the team set off up Ben Nevis and the one below shows the full team called Peaks of our Lives; Matt and Jo Webb, Helen Balhatchet, Mark Webb, Shane Wood, Ane and Paul Fletcher, Pauline Lisk (Matt and Mark’s Mum wearing the RSA T-shirt), and Rachel Lisa. This challenge was in memory of Bill Fletcher, Paul’s father.

Paul said “My Dad was one of the unlucky few to develop both Raynaud's and scleroderma. Whilst he battled against the condition he continued to give his own time to help others and worked as a volunteer for the Hospital Ambulance Service taking those who were too old or unwell to and from hospital. He lost his battle with the illness over 15 years ago. I had intended to do the Three Peaks Challenge for the RSA when he was still alive and I was much younger. Unfortunately it didn’t happen, so the team Peaks Of Our Lives decided to give some of their time and a little effort, to raise money for such a good cause”.

Pictured above are Georgina, Talya and Seryon who have supported Lin’s efforts to raise funds over many years. We are also grateful to the Department for Work and Pensions in Dagenham who were most supportive of the event.

Ceilidh John Anderson organised a very successful Ceilidh which raised a splendid £694.50 towards the Cool Million.

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Alsager’s Can’t Sing Choirs (of which Anne is a member!), gave a concert in December and the RSA was fortunate to be a recipient of 50% of the proceeds. This resulted in the RSA receiving the grand total of £709.50, which included the sale of CDs and DVDs of the event provided by Val and Derek Holtom. We are most grateful to the people of Alsager who supported this concert, Jack Taverner, our choir master and of course to members of the choir who selected our charity. Singing is good for your health, improving breathing and relaxation. If you have a choir near you it is certainly worth a try. Anne has never looked back since joining her choir and the idea of a ‘Can’t Sing Choir’ was very appealing - it is surprising what you can do with a bit of effort and enthusiasm!

Photograph by kind permission of Congleton Chronicle Series

Great Gable Climb Raises £280

Follow Us Keep up to date with the latest news from the RSA by following the us on Facebook and Twitter. For details see our website www.raynauds.org.uk

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Birmingham Half Marathon Sarah McKnight, who took part in the Birmingham Half Marathon in memory of her mother Jayne, raising £565. Your Mum would have been very proud of you Sarah. Thank you.

Golden Wedding On Remembrance Sunday I climbed to the peak of Great Gable with a banner supporting the Raynaud’s & Scleroderma Association. Having expected the weather to be cold and windy, it was a lovely surprise to find glorious sunshine. I duly arrived at the summit (2949ft) at 11.45am and made my way to the top cairn. I went to pay my respects and lay a poppy on a bronze war memorial that was dedicated by the Fell and Rock Climbing Club in 1924. Since then this has been the inspiring scene of an Annual Remembrance Service to fell walkers who gave their lives defending the rights of others.

Thank you to all the fantastic people who sponsored me for the venture and here’s to the next time!

Antonio Pupino took part in the Etape du Tour, an amateur bike race which attracts 10,000 participants tackling a mountain stage of the Tour de France. Antonio raised a wonderful £619 by taking part in this event for the RSA.

Denise and David Draper, requested donations to the RSA for their Golden Wedding Anniversary and we were delighted to receive cheques totalling £140.

Found on the streets of Brighton and Hove Our thanks to member David Bungard who sent us a cheque for £26 which was money he found on the streets.

Maybe we should all keep our heads down!!

Rob Lovatt

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Do You Struggle With Heating Bills?

We often receive telephone calls from members who are struggling with their heating bills.

Unfortunately having Raynaud’s does not entitle you to help with heating costs because of the large number of people in the UK with the condition.

However, there is still help available. We have been in contact with the National Energy Association (NEA), a charity that campaigns to keep fuel prices at a reasonable rate and offers advice on where people can turn for help. If you are having difficulty in paying your heating bills, they recommend that you first get in touch with your energy company.

They can work with you to find a solution to your payment difficulties and may help you to set up a payment plan.

If your energy supplier considers you to be eligible they may offer you a social tariff with discounted rates. Alternatively, the Home Heat Helpline (0800 336699) can also provide advice on benefits, grants for free home insulation and can advise on special payment options for your energy supplier.

Carers or family members can also call this helpline. If you are not sure if you are eligible for any benefits, contact your local Pension Service, Jobcentre Plus, Citizens Advice Bureau, Money Advice Agency or Welfare Rights Office. For more information visit www.nea.org.uk. A copy of the NEA leaflet, ‘Keeping Warm in Your Home’, can be found on the RSA website.

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Items For Sale

Hot Mouse Ltd

Sue Hazel has a storm walker heated jacket which she is happy to pass on to any member who would like to make a donation to the RSA. It is second hand in excellent condition but not quite suited for the purpose she intended it for - a whole day of rock climbing! Sue can be contacted on 01962 880 126.

Peter Williams has a Wax bath which he would like to pass on to another member. If you are interested please contact Peter on 01691 654 725 or email petertreflach@btinternet.com

Gift Aid Donations If you are making a donation as a UK taxpayer, please help the RSA to take advantage of the Gift Aid Scheme. For example, if you give £10 using Gift Aid, it is worth £12.50 to the RSA.

distribute at funerals, which explain about Gift Aid, giving an opportunity for people to make a donation in this way. These cards are available by contacting the RSA.

The Gift Aid Declaration

Sponsor Forms

This is a simple form available from the RSA and on our website.

Declarations can also be made on the membership/renewal forms or in a letter. The essential details we need are: your full name, your home address (including post code) and confirmation that it is a Gift Aid donation and you are a UK Tax payer.

The essential details listed above are required on sponsor forms if the donor is a taxpayer. When several people from the same company or organisation tick the Gift Aid box, we still need their home address and postcode.

Donations in memory

If you need any further information call us on 01270 872776.

We are often asked for cards to

Green Help

Works with PCs, laptops and Macs.

Price £19.99 plus £2.99 p & p Visit www.hotmouse.co.uk for more details or to pay by PayPal Alternatively send a cheque made payable to: Hot Mouse Ltd. to: Miss K Chapman Hot Mouse Ltd., Hill Rise, Moor Lane Great Ouseburn, York YO26 9TT

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Warm That Sole Warm That Sole is a beautifully warming, soothing, antibacterial and antiseptic blend of essential oils.

If you get cold hands when using your computer at home or work (especially in air conditioning spaces), a Hot Mouse may be the answer.

Hot Mouse has all the features of a regular optical mouse with a hand warming facility. Simply plug into a USB port and the mouse will warm up – perfect for anybody suffering with Raynaud’s, arthritis or tendonitis.

Details given are used solely for the purpose of claiming Gift Aid.

Turtle Doves are wrist warmers and fingerless gloves rolled into one. They’re designed to be worn on the wrist all day helping to keep your wrists and hands warm. Made from recycled jumpers, they are environmentally friendly and not only do they look and feel great but they are practical too. Every pair of Turtle Doves is unique; they come in all the colours of the rainbow... but they’re all green!

These oils were blended to treat all the symptoms accompanying poor peripheral circulation.

These include cold painful hands and feet, chilblains and Raynaud's. People using Warm That Sole report rapid relief of some of these symptoms.

For further details or to place an order visit: www.turtle-doves.com or call 01743 344702.

Warm That Sole is suitable for use by most people except during pregnancy and breastfeeding, those suffering from epilepsy, and children under five. Cancer patients are required to seek permission from their oncologist before using the oils. Most oncologists readily agree to their use.

Anne’s Tip - I wear a pair of Turtle Doves wrist warmers under my other mittens for extra warmth and they are not too bulky.

For further information call 01625 869 966 or buy online at www.footessentials.co.uk

Prices range from £10 plus £2 p&p

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Research News Blood Vessel Lining Cells: Are they good targets for treatment in scleroderma?

Although scleroderma is characterised by scarring and fibrosis of the skin and other major organs, it is widely believed that the disease process starts in the blood vessels. Blood vessel walls are lined by cells that are called endothelial cells. When these cells are damaged or become activated, they release soluble factors into the circulation which can Dr Sarah Howat cause the blood vessels to constrict and thicken. This remodelling process causes alteration in the vessel structure which results in the vessel becoming occluded causing reduced flow and an increase in blood pressure. These pathological events are thought to be especially relevant in some of the complications of scleroderma such as digital ulcers and pulmonary arterial hypertension. The aim of the research project was to examine blood vessel lining cells in scleroderma skin, and to investigate changes in the endothelial cell function when these cells are damaged and activated.

The study centred on a key regulatory pathway in endothelial cells called ‘ALK’, and was specifically focused to identify which are the

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We Need Help With Research Our study is testing an Occupational Therapy (OT) assessment, called the ‘Evaluation of Daily Activity Questionnaire’. It is used by occupational therapists (OTs) to find out what problems patients may have doing everyday activities, such as dressing, housework, gardening, getting about and leisure. It improves how OTs and patients identify problems and find practical solutions.

It was developed in Sweden and we now want to use it in the UK. But we have to test it here first before we can do so. People with a variety of musculoskeletal conditions and types of arthritis have already helped us get the wording and content right for the UK. Next, we need to test it with a larger number of people. We particularly need help from people with systemic sclerosis (or scleroderma).

If you are interested, we can send you more information. You can take time to decide if you want to take part or not. If you decide to take part, then return the reply form to us. If you change your mind later, this is not a problem. If you decide not to take part, don’t return the reply form and we won’t contact you again. If you agree to take part, we mail you the study questionnaire to fill in at home in your own time. It takes about 45 minutes to 1.5 hours. We include a Freepost envelope for your reply. We also ask you to fill in another copy of part of the questionnaire again about 3 to 4 weeks later. If you have any queries about the study now, or when you have read the information sheet, just give us a call.

For more information, contact us at this Freepost address, or by email or telephone, quoting ‘Scleroderma EDAQ study’.

RHSC-TRSU-TABY Yeliz Greenhill/Alison Hammond, Centre for Health Sciences Research, University of Salford, C407/8 Allerton, Frederick Road, Salford M6 6PU E-mail: y.greenhill@salford.ac.uk or a.hammond@salford.ac.uk Tel: 0161 295 0211 (Yeliz Greenhill) or 0161 295 0038 (Prof.

Alison Hammond)” UK EDAQ MSC patient organisation web/newsletter info Phase 2 v1 18.1.12 RSA

most important proteins in this pathway that lead to endothelial cell activation. The experiments carried out showed that the ‘ALK’ pathway was present in scleroderma, and that several members of the pathway were found at higher levels in scleroderma cells and tissue compared with control normal samples.

An intriguing and new aspect of this research is that stimulation of the ‘ALK’ pathway resulted in an increase in the growth and survival of endothelial cells and would clearly have an impact upon blood vessel structure. These novel studies form the foundation of work which suggests that there is potential in stopping the action of this pathway in the vascular complications of scleroderma. Drugs based on inhibiting the ‘ALK’ pathway are already in development for the treatment of other human diseases. When we have fully explored the role of this pathway in scleroderma, it is likely that similar drugs, once shown to be safe could be used to treat some of the vascular complications of scleroderma.

Dr Sarah Howat Cardiovascular Division, School of Medicine, King's College, London

Prescription Charges We have been working with the Prescription Charges Coalition in order to get support for reducing the cost of prescription charges for people with long term medical conditions.

If you would like to support this campaign, please sign the petition which you can find at http://epetitions.direct.gov.uk/petitions/25087 or by clicking the link on our scleroderma page www.scleroderma.org.uk

Text Giving Did you know that you can donate by text?

All one needs to do in order to donate to the RSA via a mobile phone is to text COOL22 followed by the amount that you want to donate and send it to 70070. For example, if you wanted to donate £5 you would text COOL22 £5 to 70070. The donor will receive a text message receipt and the chance to add Gift Aid if a UK taxpayer. Just imagine the impact if the 10 million people in the UK with Raynaud’s each donated £1! Please encourage your friends to donate in this way.

HealthUnlocked The RSA has an online resource to help bring the RSA community together. This free site is aimed at helping people who are either suffering personally, or supporting someone else who is. This site is now used on a regular basis and is proving to be an invaluable source of information for people who have Raynaud’s and scleroderma. To register on the site visit: http://raynauds.healthunlocked.com/ and on the top right hand side you will see the word ‘join’.

If you have any queries about healthunlocked contact Hannah at the RSA on: 01270 872776 or email: hannah@raynauds.org.uk

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NIGGLES CORNER These are just a few of my ‘niggles’. What are yours? Do share them with us.

Peeling a tangerine without getting finger bandages stained Asking for help packing goods at the checkout Public toilets which have flushes you have to press and taps you can’t turn Putting petrol in my car - can’t hold the lever for long enough Taking foil top off milk carton

LOCAL CONTACTS Burton on Trent, Helen Nutland

01283 566333 Ext. 5032 Bristol, Margaret Goff

01454 310225 South Cumbria/ North Lancs

Using cash machines - had card swallowed twice because fingers couldn’t grip card to pull it out Can’t lift kettle or saucepan once water is in Parking meters - difficulty getting coins in - they usually end up on the floor and then can’t pick them up

02380 610678 Fife, Rose Bevan

01382 552272 Knaresborough, Tony Overend

01423 862551 Manchester, Gill Holden

01942 877259 0151 280 1194 07751 333 633 Email: jonandhel@sky.com North East, Jessie Pickering

01388 527840

Impossible to open sachets of coffee and sugar etc.

Lids extremely difficult on coffee and other jars and bottles Turning pages of a book when reading to my granddaughter - she is now 5 and does it for me I don’t shake hands any more - just politely decline as it is obvious why when they see my hands.

N. Ireland, Patience Bradley

02890 592370 Mobile: 07966 416553 North Wales, Kate Owen

01492 515834 Oxford, Melanie Bowen

01865 515067

Trying to get the cork out of sherry bottles!

I am lucky because my husband is usually around to help with cooking and shopping.

I know that many of our members live alone and have great difficulty coping with everyday tasks which would be simple for ‘normal’ hands. It is not always easy to ask for help when needed - but I am getting better at it! We would particularly like to hear from men who have problems trying to do DIY jobs etc. We get little feedback from our male members but I feel sure they have a lot to offer in the way of tips and ‘niggles’!

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Merseyside, Helen Lingwood

Buttons on clothing are a ‘no no’ - need zips Tablets - if I manage to operate the blister packs the steroids in particular are so small they usually end up on the floor

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Eastleigh, Kathy Allen

Frustration trying to hold or thread a needle No strength in my arms so need help getting up from the floor - once down I need someone or something to lean on to get me up

Ruth Randall

01524 903493

Rickmansworth, Marilyn York

01923 286780 Shipley, W Yorks, Bev Myers

07903 448038 Suffolk & North Essex, Jacky March

01473 717206

Anne Mawdsley

Surrey, Fay Collings

01737 762005

£2,250 Donation

Prof Dame Carol Black with Mr Paul Ridout (right)

We were delighted when The Worshipful Company of Joiners and Ceilers of the City of London contacted us and invited Professor Dame Carol Black, Anne Mawdsley and Kathryn Thomas to a dinner in London. The Master of the Company, Mr Paul Ridout chose our charity to benefit from fundraising events during his year of office. He is a friend of Kathryn’s parents and had seen the problems which Kathryn has experienced throughout her life due to Raynaud’s and scleroderma. As a result of Mr Ridout’s year in office we were delighted to receive a total of £2,250, which included money from a Livery Charity Golf Day, a Ladies Tour of the Royal Opera House and a Beach Hut Party organised by Kathryn’s parents Colin and Lorraine, which raised £1,000.

Worcestershire, Shirley Lynch

01386 553392

Members wanting contacts Member Judith Bevington would like to speak to another member who has been prescribed Bosentan.

Rita Boulton from Dunton in Bedfordshire wants to be in touch with the intention of setting up a group.

Julie McCabe has a 7 year old who has Raynaud’s and she would very much like to be in touch with other parents of young children.

Drewena Brownlie from Aberdeen would like contact with other members in her area.

Please write to any of these members through the RSA.

PUBLISHED BY THE RAYNAUD’S & SCLERODERMA ASSOCIATION

112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk EDITOR: Anne H Mawdsley MBE Charity Reg. No. 326306

Raynaud's & Scleroderma Association © Copyright 2012. All Rights Reserved.

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Raynaud’s & Scleroderma Association Anne will be joined by Don Gilet (Ex-EastEnders Actor - Lucas Johnson) to pedal a pedalo a distance of 5 miles on Lake Windermere from Fell Foot Park (National Trust) to Ferry Nab. All monies raised by this challenge will go towards the Cool Million. Please support Anne if you can - every penny counts!

SPONSOR FORM Name: Anne Mawdsley

Event: Pedalo Challenge on Lake Windermere

If you are a UK taxpayer, by stating your name, full address including postcode and ticking the Gift Aid box below, we can reclaim the tax on your donation. This means for every £100 donated through Gift-Aid we would receive an additional £25.

We, who have ticked the box ‘Gift Aid’ wish the Raynaud’s & Scleroderma Association to reclaim tax on the donation below. We understand that each of us must pay income tax or capital gains tax equal to the tax reclaimed by the RSA on our donation.

Full Name

Your Home Address* (Not Work Address)

Date: 11th June 2012 Alternatively you can donate online at:

www.justgiving.com/rsapedalo Your support is appreciated

Post Code*

* This is required to claim gift aid and will not be used for any other purpose

To be completed by the Charity: Amount donated to charity £ ______________ Total income tax to be reclaimed on above donations £ ______________

Gift Aid

Amount

Tick if a taxpayer

Total donations £___________

Please note: all cheques should be made payable to the Raynaud’s & Scleroderma Association and sent to RSA 112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Email: info@raynauds.org.uk Website: www.raynauds.org.uk

All monies donated will be used towards the Cool Million.

Date Given (dd/mm/yy)