Hot News Dec

Issue No. 125

Volume 3 2013

Shop Goes Global

In this issue...

Exciting times here at Head Office! The RSA shop can now distribute items worldwide. Orders have already arrived from Europe, Australia, Canada and New Zealand since we extended our shop services recently.

Karen Littley, who manages the online shop, says “This is something we have wanted to do and now that we’ve developed the RSA shop website to accommodate overseas trade and meet different countries regulations, it is a real achievement”. Liz Bevins (CEO) looks to the future, hoping the shop’s expansion will contribute towards the charity becoming more self-sustaining and generate income to support the RSA’s development plans to help those with Raynaud’s or scleroderma.

Conference Pictures Page 2

RSA wristbands are proving a popular new product.

For just £1 you can help us to raise awareness of the charity by wearing yours with pride, knowing that you are also contributing to essential fundraising for the charity. Why not treat a friend to one too to ‘spread the word’?

Please Order online at www.rsa-shop.co.uk Should you prefer to order goods using a cheque, we’ve included a handy ‘pull out’ section in this edition of Hot News, together with a selection of pictures of products and of course you can always phone for further details about what you are planning to purchase on 01270 872776. If you are paying for shop goods by cheque, please make it payable to ‘RSA Trading Co Ltd’.

New Shop Stock Page 5

Your Membership Please renew your membership as your continued support is very much valued and appreciated If your membership number has a letter ‘T’ next to it, please renew online or you can use the form on the back of your address label where your membership number is located above your name and you can send us a cheque made payable to ‘Raynaud’s & Scleroderma Association’.

Doc Spot Page 8

The RSA is encouraging people to order and pay online if and when they possibly can, as it saves time and resources that can be used to help the charity in other ways. In the same way, please pay by credit or debit card wherever possible when you are either renewing your membership or applying for the first time. Again, this helps the RSA to save money which can then be used for patient and carer support. Thank you.

Please remember – if you are purchasing stock and membership you will need to send us two cheques.

Fundraisers Page 11

Chief Officer Update attended the RSA conference. We are planning a jointly-badged postcard which highlights the association between Raynaud’s and scleroderma and have developed banners which display we are ‘working in partnership’ (see photo below). There is more joint working in the pipeline for the future…

Elizabeth Bevins

Dear Supporters, Summer stretched ahead of us and now we’re skidding into Autumn and diving into Winter with our 3rd edition in 2013! With so many changes and developments here at the RSA it has been a ‘roller coaster’ ride here for all those who continue to work for you in Alsager – including some real leaps forward to help develop the RSA. Ensuring the ‘building blocks’ are in place and ‘thinking outside of the box’ to formulate solutions are amongst the phrases that spring to mind when looking to the future for the RSA. It is nearly a year since Sam and I joined the RSA and already the team is changing. As you will see from Anne’s article on the back page, she has decided to leave the RSA and set up her own service, continuing to support those RSA members who seek her special contact as founder and friend. It was a joyous experience to meet long-standing members at the RSA conference in September. For the first time, we opened up the invitation to a wider group of supporters of the RSA and those interested in our work , as well as our loyal members. For me it was a humbling occasion and strengthened resolutions to focus on the people we seek to help – those with Raynaud’s and/or scleroderma.

News on the networking front! Earlier this year the trustees from the RSA and the Scleroderma Society met together for the first time to look at ways of better serving the needs of those with scleroderma. A working group has since been set up, dedicated to ensuring the two organisations “play to their strengths”, whilst avoiding duplication of effort and scarce resources, thus minimising confusion to patients and those with a vested interest in Raynaud’s and scleroderma. It is early days, but the positives are that I was invited to attend the Scleroderma Society Conference at the Royal Free and subsequently, Steve Holloway, their trustee and secretary,

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Although we operate in a different world socially, politically, financially and in ways that we communicate and share information - the basic premise of caring for individuals and reaching out to people in need still remains. It is the belief that all the team at the RSA share, however it is achieved.

On the topic of newsletters, this year we have produced three editions, rather than the usual four. The good news is that content has increased, but it is a matter of resources. I noticed that Pharmaceutical companies often sponsored production and activities at the RSA and although we’ll investigate further next year, Anne and I were told before I took on the CEO role last year by the ‘Pharma’ companies we met last Autumn, that they were no longer able to assist is in the same ways as previously. The technical side is that the RSA is developing a ‘Pharma Policy’ for the future – something which other charities either have or are developing.

Over the summer the RSA shop has at last ‘Gone Global’ and we are looking at ways of attracting a wider audience for those who seek ‘cold weather gear’ from Australia, Canada, the USA and Europe as well as the UK. Early days, but necessary to ensure our charity thrives in difficult economic circumstances and continues to follow our aims and ambitions. Christmas cards are available and we are encouraging as many as are able to place orders online at www.rsa-shop.co.uk.

We continue to invite institutions to submit proposals for ‘start-up’ grants and have set some simple guidelines for those seeking welfare help. Sam has performed near-miracles in setting up procedures, managing staff and working with Anne to ensure the success of the Conference this year – many thanks to both of them. Sam has decided to seize the opportunity offered by Cheshire & Warrington Carers Centre, for whom she has been working part time recently, to expand her work with them. We wish her all the very best and thank her for her sterling work and commitment to the charity in recent months, including her organisational input to making the conference a success in Chester and co-ordinating the newsletter this year.

I’ve continued to meet with medical professionals including Dr Marina Anderson and the team in Liverpool; Dr Maya Buch and Dr Francesco Del Galdo in Leeds and am contributing to the development of an EU-funded Health Professionals Charter for Scleroderma.

Look out in this edition for details for those wishing to book for the 3rd Systemic Sclerosis World Congress in Rome in February. Details are given in a short article in this edition of Hot News.

And finally, we remain most grateful for the input from Professor Chris Denton at the Royal Free to the Doc Spot, and to all those who support the charity as fundraisers, health professionals and of course, our members - thank you and keep warm this winter.

Best wishes

Elizabeth Bevins Chief Executive Officer

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.

Successful Conference 31st Annual Conference Our 31st Annual Conference, held in September, at The Mercure Hotel in Chester was extremely interesting due to a packed programme of speakers from across the UK. We have had excellent feedback on the event and overwhelmingly, but not surprisingly, attendees find it beneficial to talk to others in a similar situation and to learn from each other about ways to cope.

Dr Tom Sheeran of Mid Staffs NHS Trust gave an excellent overview of Raynaud's Attendees at the Conference

The Dee Sign Choir provided lively entertainment on the Friday night and as you can see (pictured below), they clearly enjoy what they do.

‘Olga’s Beauties’ won the quiz on Saturday evening and kindly shared their tin of chocolates with everyone after our tasty buffet.

Dee Sign Choir performing

Olga and Louise Ward

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Christmas Cards 2013 ‘Skating around the Christmas Tree’ Our new design for the festive season 16cm x 16cm 10 cards for £4.00

‘Penguin Fun’ and ‘Wrapping up Warm’ Twin Pack whilst stocks last Two designs in each pack 13cm x 13cm 10 cards for £3.50

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Lovely Christmas Gifts

Candy (38cm) £12.00

Frog (30cm) £10.00

Hooty - Snowy (22cm) £10.00

Ellie (38cm) £12.00

Olivia (38cm) £12.00

Ragdolls are filled with Millet and Dried Lavender • Please note the dolls and animals are not suitable for children under 3 years old

Hooty - Pink (22cm) £10.00

Panda (30cm) £10.00

Brown Owl (22cm) £10.00

The slippers are only available in one size 3-8

Beige £15.00

Cream £15.00

Brown £15.00 05

Pull Out Order Form ITEM Percy Beanie Snowdrop Beanie Bottle Opener Ring Can Pull Stockinette Gloves (4 pairs) Jarkey Single Key Turner Double Key Turner Flap Over Mittens (one pair) RSA Wristband

COST 2.50 2.50 4.20 4.80 3.00 7.20 6.00 6.60 3.00 1.00

HEATING AIDS Thermogel Hand Warmers (pair) Mycoal Foot Warmers (4 packs) Mycoal Hand Warmers (4 packs) Mycoal Body Warmers (4 packs) Mycoal Warmers (Box 40 pairs) State type, eg hand or foot Heat Ease (pack of 6) Mycoal Fleece Mittens Wheaty Bags (one pair) Cozy Bottle Hotrox USB

5.00 6.75 6.75 6.75 60.00 8.00 6.00 12.00 15.50 20.00

SILVER SOCKS & GLOVES Glover per pair XS Glover per pair S-M Gloves per pair L-XL Fingerless Gloves M Fingerless Gloves L Short socks per pair S (shoe size 2-4) Short socks per pair M (shoe size 5-6.5) Short socks per pair L (shoe size 7-9) Short socks per pair XL (shoe size 10-11) Long socks per pair S (shoe size 2-4) Long socks per pair M (shoe size 5-6.5) Long socks per pair L (shoe size 7-9) Long socks per pair XL (shoe size 10-11) Diabetic short socks per pair M (shoe size 5-6.5) Diabetic short socks per pair L (shoe size 7-9) Diabetic long socks per pair M (shoe size 5-6.5) Diabetic long socks per pair L (shoe size 7-9)

9.50 9.50 9.50 9.50 9.50 13.00 13.00 13.00 13.00 16.00 16.00 16.00 16.00 13.50 13.50 16.50 16.50

BUNDLE DEALS (please state sizes) One glove and one short sock 3 pairs long socks One glove and one long sock 3 pairs short socks Two pairs of gloves

20.50 45.00 23.00 36.00 18.00

HOT TOGS - LEGGINGS & SOCKS Thermal leggings S Thermal leggings M Thermal leggings L Thermolite Walking socks M Thermolite Walking socks L

14.40 14.40 14.40 9.00 9.00

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QTY

TOTAL £’s

Pull Out Order Form ITEM NEW MICROWAVEABLE PRODUCTS Candy Ellie Olivia Frog Panda Brown Owl Snowy Owl Pink Owl Beige Slippers Cream Slippers Brown Slippers

COST

QTY

TOTAL £’s

12.00 12.00 12.00 10.00 10.00 10.00 10.00 10.00 15.00 15.00 15.00

CHRISTMAS CARDS Skating Round The Tree Penguin Fun / Wrapping up Warm

4.00 3.50

POSTAGE & PACKING COSTS Up to £20.00 order value Up to £50.00 order value Over £50.00 order value

3.75 5.00 8.00

TOTAL ORDER POSTAGE & PACKAGING TOTAL ENCLOSED £

Your Details Name: ________________________________________________

Ship to (if different)

Address: ______________________________________________

Name: ________________________________________________

______________________________________________________

Address: ______________________________________________

______________________________________________________

______________________________________________________

Postcode: ____________________________________________

______________________________________________________

Contact Number: ______________________________________

Postcode: ____________________________________________

Email: ________________________________________________

Email: ________________________________________________

Order by Mail: Please send the order form with your cheque/card details to RSA Trading Co Ltd 112 Crewe Road Alsager Cheshire ST7 2JA

Order by Telephone: Please call us with your order and card details

Order Online: Go to our website www.rsa-shop.co.uk

Please charge my Visa / Mastercard / Delta / Switch Account Number: (please delete as appropriate)

❒❒❒❒ ❒❒❒❒ ❒❒❒❒ ❒❒❒❒ ❒❒ ❒❒ ❒❒ ❒❒ ❒❒ ❒❒❒ Expiry Date:

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Signature: ______________________________________________________ Your credit card security number is the last three digits of the number in the signature strip on the back of your card

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Doc Spot that could be relevant and you should discuss that with your doctor.

Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free London, NHS Foundation Trust

Q: I was hoping you may be able to give me some advice. I have Raynaud's, and someone has told me if you keep having prolonged and severe attacks it can cause damage to the blood vessels, is this true?

A: In primary Raynaud's phenomenon, that is not associated with any underlying disease such as scleroderma, there is no reason for prolonged attacks to damage blood vessels although sometimes associated features such as chilblains may occur if there is inflammation related to local areas of tissue damage. However, in a disease such as scleroderma, Raynaud's is associated with more severe blood vessel damage and some patients do develop more severe problems after prolonged attacks, such as worsening of digital ulceration and even gangrene. This makes treatment important and also means that all possible measures to avoid severe prolonged Raynaud's attacks should be taken.

Q I have primary Raynaud's and wonder if this would affect pregnancy as my partner and I are keen to start a family. I am 37 years old.

A: In primary Raynaud's, where there is no associated disease such as scleroderma, there is little impact on pregnancy. Most patients find that the Raynaud's symptoms are less severe during pregnancy, probably due to the hormonal changes that occur in pregnancy. However Raynaud's symptoms may worsen 3 or 4 months after delivery.

Usually they then return to previous severity.

Practical aspects to avoid attacks should be taken such as warming infusion fluids that are needed at the time of delivery. Also the effect of any Raynaud's treatments should be considered as some commonly used drugs such as losartan are not safe during pregnancy as they may cause damage to the developing baby.

Q I have had chilblains all summer. Is this related to Raynaud's or just poor circulation?

A Chilblains occur when there is prolonged cold induced damage to local areas of skin and this leads to inflammation and itching or pain. There is usually the development of a painful itchy lump that lasts several days or longer. Although Raynaud's may contribute to the development of chilblains by reducing blood supply to the extremities when it is

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cold, only a minority of cases of chilblains are directly associated with Raynaud's and so there is no evidence of a direct link.

Chilblains in the summer are unusual and it would be sensible to discuss this with your doctor in case referral or any other investigations might be required.

Q I have scleroderma and seem to be getting more and more tired all the time. Everything is an effort. I understand that fatigue plays a part in scleroderma but is there anything I can do to get some more energy?

A Fatigue is a common feature of many inflammatory or autoimmune diseases such as lupus or scleroderma or Sjogren's syndrome. Scleroderma patients often describe “hitting a wall� of fatigue that really makes it difficult to carry on and necessitates a rest. After a proper period of rest the fatigue may improve and so this is a potential way of reducing its impact. Ensuring that medical causes such as anaemia, low thyroid function or any relevant muscle weakness or inflammation are treated are also important.

However there is often no specific cause other than scleroderma. Graded increases in exercise have been shown in some cases to improve symptoms of fatigue and this may be a useful strategy.

Q: I have had 3 years of ANA positive results correlating with systemic sclerosis. This has been rising every year since my first rheumatology investigation for various aches and pains. (I was ANA negative and I only have a touch of Raynaud's). I don't understand why I am now testing ANA negative. A lab mistake? Any information welcome. That's a bit of a change in a few Q: I have had scleroderma (SSc) for 15 months!! years. It's weakened all my limbs as well as affecting skin, lungs and the whole GI tract. In A: A positive ANA test does not always June I had a total hip replacement for progress to development of a connective osteoarthritis in my left hip joint. The surface tissue disease such as scleroderma. wound healed nicely, but despite all the postHowever, the combination of Raynaud's and op exercises, the bad leg remains extremely a positive ANA does warrant follow up and weak, making me lurch to that side when I investigation to look for altered small blood walk without a stick. Please can you offer any vessels at the base of the fingernail (nail fold advice which may be specific to capillaroscopy). If capillaries are abnormal scleroderma? and ANA persists there is increased risk of developing a connective tissue disease, A There is no reason why scleroderma including scleroderma. Sometimes the test patients should necessarily have a different does become negative - especially if only experience with hip replacement compared weakly positive and this makes it less likely to the general population with osteoarthritis that progression will occur.

However, but there are a number of practical and sometimes laboratories use different tests theoretical issues to consider. First, the effect and so a new method of assessment might of scleroderma may weaken muscles and also change the result if the ANA is atypical cause contractures, tightening of tendons or only low level. It would be worthwhile that make post-operative exercises more having capillaroscopy and checking ANA in difficult. This could delay recovery and regain another hospital or laboratory if you are of function and mobility. Second, since concerned about this result. scleroderma may affect the heart, lungs, kidneys and other vital organs it may Q Every morning I wake up with horribly stiff increase risks associated with general knees and elbows as well as all the usual anaesthesia and so it is important to discuss symptoms of MCTD with scleroderma and scleroderma with the anaesthetist before baking feet and hands thanks to proceeding. Other more theoretical aspects erythromelalgia. I now sleep with a wet cool focus on the slower healing of wounds in cloth on my feet and can't stand the duvet scleroderma and the possible effects of anywhere near me. Could it be erythro in my therapies such as steroids or knees? immunosuppressant that may increase infection risk. Nevertheless hip replacement A: Erythromelalgia is a condition in which can be a life transforming operation and there is altered regulation of nerves and scleroderma should not exclude this if it is blood vessels that leads to increased blood necessary. flow in the skin - the main symptoms are burning and red discolouration. It can affect If you have a question you would arms and legs and this includes the knees like Professor Chris Denton to answer, please send to Head Office or email which also have a circulation that responds info@raynauds.org.uk with Doc Spot to change in temperature. However MCTD in the subject heading can also cause arthritis and other features

Self Management NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore Royal Free London

020 7472 6354

LOCAL CONTACTS Bedfordshire, Rita Boulton

01767 312544

Burton on Trent, Helen Nutland

01283 566333 ext 5247

Bristol & Bath, Margaret Goff (RSA Members only)

01454 310225

South Cumbria/North Lancs, Ruth Randall Email: peteruth@talktalk.net

01524 903493

East Anglia, Jacky Marsh

01394 286637

Eastleigh, Kathy Allen

02380 610678

Fife, Rose Bevan

01382 552272

London, Ruta Rackaityte Email: rcktyt@yahoo.com

07702 245068

Merseyside, Helen Lingwood Email: jonandhel@sky.com

0151 280 1194 07751 333 633

North West, Nicki Whitehill Email: nicola.whitehill@hotmail.co.uk

01704 550580

North East, Jessie Pickering

01388 527840

North Yorks, Tony Overend

01423 862551

N. Ireland, Patience Bradley Email: patiencebradley@gmail.com

02890 592370 07966 416553

North West London, Marilyn York

01923 286780

Portsmouth & South Hampshire, Alison Wright

02392 367960 07986 900262

Surrey, Fay Collings

01737 762005

Worcestershire, Shirley Lynch Email: slynch@uwclub.net

01386 553392

(For Pulmonary Hypertension Enquiries)

Specialist Nurse Team Royal Free London

Sue Brown Bath

020 7830 2326

01225 428 823

Lynne Lister Chapel Allerton

07720 208 597

Specialist Nurse Team Manchester

0161 206 0192

Specialist Nurse Leeds

0113 3923 035

Jan Lamb Liverpool

0151 529 3034

Karen Walker Newcastle upon Tyne

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

Steve McSwiggan Dundee (Available Mon, Tues & Wed Mornings)

01382 383 233

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. The nurses who run the advice lines also have very busy schedules and therefore it is likely you will get an answerphone message where you can leave your details for the nurse to get back to you.

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Did you know?

Keeping Warm

Have you had your flu jab?

With winter approaching I thought I would pass on some tips with ways to keep warm using heat packs etc.

It is recommended that all people with chronic systemic diseases get the flu vaccine, therefore if you have systemic sclerosis (not localised forms of scleroderma) you should receive an annual flu vaccination. Check with your doctor.

My favourite is the HotRox. That is because there is no chance of scalding myself and it is very easy to use by charging either on the mains (with adaptor) or on a computer USB port. Once charged you can use it on one or two heat settings or simply turn it off when heat is no longer required. It is ideal for travelling or when out and you don't look conspicuous because it is such is modern looking item which is reuseable 500 times. I have had mine for three years and it is still working fine and I do use it regularly. It heats up in 15 seconds and provides heat for up to 6 hours.

It can be put into your pocket but I find it better to use with my Turtle Doves. Turtle Doves are fingerless gloves which can be worn as fingerless gloves or by slipping the thumb out, as wristwarmers, so can be worn all day as you don't need to take them off and lose them! They come in a variety of colours. The other good thing is that they are recycled out of pre-loved jumpers. You can get further information by visiting www.turtle-doves.co.uk or calling 01743 344702 and here is a special offer - If you have a 100% cashmere jumper that has been slightly shrunk or nibbled by moths, send it to Turtle Doves who will make you a free pair from your own jumper if they can use the rest of it. Send to: Kate Holbrook, Turtle Doves, Briar Patch, 60 Port Hill Road, Shrewsbury, SY3 8RN. You can also use the rechargeable and disposable hand warmers with them as they just slip inside easily. A tip for using the Mycoal hand, foot, body warmers and Heat Ease. They are intended to be disposable but I have found that if I haven't used them for the full time, I wrap them in cling film or foil making sure that you don't let any air get into them. You can then use them next day or a few days later. I mention the Heat Ease because I just love wearing one of these on a really cold day. They have a self adhesive backing and are brilliant in keeping the trunk warm by attaching to your under garment. They keep your whole trunk warm giving you an inner glow. Just place one on your back around the waist area and enjoy!

Certainly worth considering if you know you are going to be out in the cold for several hours.

For the feet my silver socks are a must!

My final tip is the heated Body Warmer from EX02 (www.exo2.co.uk).

Can you imagine having a garment which is heated, can be recharged from the mains and keeps you warm for hours? Pure luxury and an ideal Christmas present, especially as EX02 are offering a 25% discount to members of the RSA. Just quote your membership number when ordering.

Take a look at the RSA online shop which gives details of many more ideas www.rsa-shop.co.uk

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Are you Entitled to Attendance Allowance?

If you are under 65 you may be able to get Disability Living Allowance. The Personal Independence Payment (PIP) is replacing Disability Living Allowance for people aged 16 to 64, even if they have an indefinite or lifetime award of Disability Living Allowance.

However many people over the age of 64 may not be aware that they many be entitled to claim Attendance Allowance.

Attendance Allowance is a tax-free benefit to help you with the extra costs you may have because you are ill or disabled. The amount you get is based on the help you need as a result of your disability or condition. It is not 'means tested', so having savings or other income won't affect whether you can claim. It will not usually affect any other benefits you may be getting.

How is Attendance Allowance worked out?

There are two rates of Attendance Allowance: • Lower rate • Higher rate You may get the lower rate if you need: • help to care for yourself frequently throughout the day, or • help to care for yourself at night, or • someone to supervise you throughout the day so that you don't put yourself or other people in danger, or • someone to watch over you at night so that you don't put yourself or other people in danger, or • someone with you when you are on dialysis.

You may get the higher rate if you need: • help to care for yourself, or supervision, throughout the day and at night.

• You may also be able to get this rate if you are terminally ill.

When can you claim?

You can claim Attendance Allowance if you've needed help for at least six months. However, there are special rules for people who are terminally ill. To claim under these special rules, you will need to fill in the benefit claim form and get a separate form DS1500 from your doctor, specialist or consultant to send with it.

Someone else can claim Attendance Allowance for a person who is terminally ill. The person who is ill doesn't have to know or give their permission.

Did you know?

Questions to help you decide if you should claim Attendance Allowance Do you have difficulty, need prompting or need help with your personal care?

This means day-to-day help with things like: • getting in and out of, or settling in, bed

Helpline 0800 311 2756 • 9.00am to 9.00pm Calls from UK mainland FREE

• getting washed or dressed • using the toilet • moving around indoors - this includes using stairs, getting in or out of any type of chair or wheelchair • eating or drinking • taking medication or having therapy - this includes oxygen therapy, injections, inhalers and coping with side effects • communicating (such as hearing, speech, reading and writing)

Telephone 020 8948 9117 asknass@nass.co.uk Monday to Friday, 9am to 12pm

• supervision to keep you safe - this includes being a danger to yourself or others, being at risk of neglecting or harming yourself, wandering or falling, being confused or having fits or blackouts, or • dealing socially with other people.

For further information visit: www.gov.uk/browsebenefits or call 0845 731 3233

Anne Mawdsley

National Helpline number 0844 887 2444 The line is open Monday to Friday between 10:00 am - 4:00 pm

Welfare Officer

British Sjögren's Syndrome Association Helpline 0121 478 1133 • Office 0121 478 0222

St. James House, Eastern Road, Romford, Essex RM1 3NH Telephone 01708 731251 • www.lupusuk.org.uk

Pulmonary Hypertension Association (PHA) Telephone 01709 761450 Registered Charity No. 1120756

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Fundraising BNY Mellon Dress Down Day raised £358.05 Wendy Winifred Liddle held an Open Garden and raised £150 Paula Deverill ran the Andover Triathlon and raised £246 Heather Lee hosted a prize bingo night and raised £307.20 Fermin Ilana raised £207.50 by running the Ealing Half Marathon Latif’s Curry Night in Alsager raised £230 Anne Nequest held a coffee morning and raised £133 Phil Stringer climbed Snowdon and raised £682.55 Paul Darlison ran the Maidenhead Half Marathon raising £251.25 Sharon Rai and Sands raised over £3500 in memory of Opkar Bains by doing two runs and one cycle ride

Andy Jackson cycled s 26 mile in memory of Rosemary Chalk £415

Nicholas Hex and Peter Watson cycled 31 miles and raised £900

Ryan Jones did a sponsored silence at school and raised £12.02

Mandy, Shirley and Katy Layern took part in 13.1 mile walk Colourthon and raised just over £500

Louise Shaw held a coffee morning and raffle and raised £125

Freddie Stacy did a jail break and raised £687.86

Paisley Stow Brae Kirk raised £200

John Wood held a booksale outside office HQ and raised £30

RSA member, Joyce Bailey, nominated us to be the recipient at a Sequence Dance event in Cheshire. Sam went along to meet the dancers, who each wore an item of red, our charity colours, and was presented with a cheque for £1000.

Joan Walton organised a football match in memory of her son Robert Walton and sent us £250 Mark Macciochi completed Tough Mudder and raised £426.25 Eileen Pott raised £300 through making and selling cards

Joyce Bailey (left) and Sam Wilkinson (right)

Future fundraiser Sheila Royle for her 90th birthday raised £445

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Martin & Martyn will be walking Hadrian’s Wall in April 2014. If you would like to join them or can help out in any way, please contact Lucy@raynauds.org.uk.

The more the merrier!

A big thank you to all our fundraisers!

Fundraising Paul Livesey ran the Mud Runner and raised £305 Bric a Brac Sale held by Paul Mudie in memory of Leslie raised £350

Staff from the RSA Head Office attended a local charity market to raise funds and awareness.

Left to right: Helen Teal, Liz Bevins, Karen Littley

Avril Braidwood held a soup kitchen and raised £515 Brenda Holden did the Wirral Walk and raised £319 Karen Dowie ran the Belfast city Marathon and raised £112.50

Liz Leadbetter held a craft fair and raised £115

Gerry Smith held a cake sale and guess the name of the royal baby and raised £100

Claire & Mark McKenzie ran the Aberdeen 10k and raised £747.50 Thanks once again to Audrey Jackman for nominating our charity to receive a donation of £1000 from the Downing Street Charity Shop in Farnham. Our thanks also to Lady Tindle for this generous donation.

Debbie Pentland held Tai Chi Classes and raised £179

Rachel Clarke and Eilidh Hunter ran Edinburgh 10k and raised over £850

Iris Guscott’s book sale raised £165.68

Laura Meadowcroft and Paul Williams ran BUPA Manchester 10K and raised £625

Susie Coen ran the Leeds Half Marathon and raised £424.75 The United Reformed Church of East Cote & Northwood held a coffee morning and raised £232 Sara May held a raffle at her knitting group and raised £39

Pershore Plum Festival John & Shirley Lynch and Brenda Preston are seen below with friends raising £440

Sue Burgess celebrated her 70th Birthday and raised £149.30 Anne Wishart’s husband gave a talk and raised £40

Pat & Mike Brown’s Ruby Wedding raised £195

Gemma Sharpe climbed 3 peaks and raised £348.75 Vicky Whybrow did the Bishops Castle Round and About Walk and raised £337.50

Nina Banerjee raised £697.50 for her 70th birthday by completing the 3 peaks challenge

A big thank you to all our fundraisers!

13

Boston’s Visit

Super-Specialist Scleroderma Clinics: Raising Awareness in Boston, Massachusetts In August 2013, with support from the Raynaud’s & Scleroderma Association I had the fortunate opportunity to travel to Boston, Massachusetts in the USA to attend the ‘13th International Workshop on Scleroderma Research’. As a medical student, it was both an honour and a privilege to be invited to attend this annual conference to present a poster on the availability of Superspecialist Scleroderma clinics at my local District General Hospital, Queen’s Hospital, Romford.

In May 2013 I carried out a rheumatology placement with Professor Kuntal Chakravarty at Queen’s hospital and was afforded the privilege of meeting many patients with Scleroderma who are lucky enough to receive world class treatment. I found this to be very impressive and was pleased indeed to see that even patients with such a rare condition were being given the opportunity to be seen and treated in their local hospital, as opposed to travelling far afield to other specialist centres. It was this experience that inspired me to submit an abstract to the International Workshop for Scleroderma Research in an attempt to broadcast this excellent work in the hope that the importance of patients with rare conditions receiving specialist care in their local area would be recognised by clinicians globally.

Patients with rare diseases are unfortunate on two counts. Not only does their affliction cause undeniable distress, but coupled with an apparent lack of specialist care at a local level, a holistic approach to their treatment is rarely maintained.

In order to quantify the effects of having such specialist care provided within this ‘Hub and Spoke’ model of care, I conducted a survey of all of the scleroderma patients seen at Queen’s

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hospital. The results showed the 98% of patients were satisfied with the care they received, 95% of patients stated that attending their local hospital for the same specialist care that they could receive from further afield was easier financially and from a convenience perspective. 97% of patients felt that their disease was well controlled due to their attendance at the specialist clinic.

The poster was very well received at the Scleroderma Workshop and many clinicians and scientists alike were interested to see how this model of care could be replicated on a wider scale. The poster included information on the possibility of improving on this model of care further still, by utilizing expert patients in order to create a truly holistic and supportive model of care for patients with scleroderma.

Although scleroderma is a rare disease, affecting approximately 1 in 10,000 people in the UK, it is a disease that affects all body systems and has major effects on the lives of those who suffer from it, along with their relatives and carers. Meeting scleroderma patients and learning about the difficulties that exist for so many affected patients in terms of access to specialist care, has motivated me to continue learning more about the condition and in my future as a practising doctor I hope to get the chance to be privileged enough to treat many scleroderma patients.

Lisa Elam Final Year Medical Student Bart’s and The London School of Medicine and Dentistry

World Congress 2014

In our last Hot News we asked you to Save the Dates for the 3rd Systemic Sclerosis World Congress in Rome taking place between February 6 to 8 2014. We now have the following details if you wish to make a booking.

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Hotel Reservation

Congress registration for ALL

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Booking must be done through the website if the nights you want to book are between 5 and 8 February.

Booking nights outside this period cannot be done directly on the website, but must be done sending an email to ssc2014.hotel@aimgroup.eu.

Conditions and hotel details are on the website. The Clar Hotel is cheaper than the Ergife (where the congress is held) and it is a short walk away.

To book online, you need to have registered first at the general site of the congress (just follow instructions on the screen).

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For those who have no easy access to the internet, you can ring our RSA Freephone number which is 0800 917 2494 and we will send out a form that you can send direct to AIM.

Registration must be done through the website (or downloading and printing a paper form to fill in and send to AIM. The online registration process has two steps: first you need to register in the general site of the congress, and that will give you different options as hotel booking or congress registration. Then you have to select the option of patient congress registration.

The website is http://web.aimgroupinternational.com/2014/patientcongress/index.html Plain and simple, an ICE Card is a card you carry with you everywhere you go. If you are ever in an emergency situation and are unable to speak for yourself, your ICE Card holds all the important information required by first responders to ensure your medical needs are properly and safely met. It also holds the contact details of the people you’ve selected to be notified - just as the card says - in case of emergency.

The card is made of durable PVC with a fully writable reverse surface.

Information saves time, information saves lives. If you are taken ill or injured, carrying your ICE Card could make all the difference.

Visit http://www.icecard.co.uk for more details and to buy yours today!

Chief Executive Elizabeth Bevins President Prof. Dame Carol Black DBE Vice President Prof Chris Denton Trustees Barry Hicks Joanna Kaddish Professor Jeremy Pearson Professor David Scott Executive Directors of RSA Trading Co Ltd Geoff Baggott Terry Warrener

Patrons Sharron Davies MBE Roger Jefcoate CBE DL Veronica, Lady Piercy Nick Ross David Wilkie MBE 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. A Silman Dr. D Veale

Head Office 112 Crewe Road, Alsager, Cheshire ST7 2JA Telephone: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk Charity Reg No. 326306 VAT Reg No. 159099076

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Wishing our Founder, Anne Mawdsley MBE all the best in 2014 . . .

Heat Pad Anne’s message to you about Raynaud’s & Scleroderma Care & Support

“Anne Mawdsley, our Founder and CEO for 30 years is retiring from the RSA at the end of 2013. She would very much like to thank everyone for their support during this time and would very much like to keep in touch with members, who either want help and advice or just for a chat.

The product is a heat pad which to activate you simply click the small metal disk within the hotbott pad and it heats up immediately reaching 54˚C and remains warm for around 90 minutes.

The benefits of the product is that it is compact, versatile, environmentally friendly and can be used up to 1000 times by simply boiling in hot water for a few minutes until ALL the crystals are dissolved.

Anne will still be very much involved with welfare. Her new website aims to give information, care and support for any person, carer, or health professional involved with Raynaud’s and scleroderma”.

Watch a video of how to reuse your heatpad at http://www.youtube.com/watch?v=IJSg8btrQ0g

The Hotbott Heat Pad measures 22cm x 13cm

Prices as follows:-

Contact details (available from 1st January 2014): www.raynaudsandscleroderma.co.uk anne@raynaudsandscleroderma.co.uk Telephone 07530 810 964.

1 = £7.50 + £3.00 p&p £10.50 2 = £15.00 + £5.60 p&p = £20.60

To order these products, please contact us on 01270 872776 at the RSA Head Office and we will take payment and arrange for the Hotbott to be sent direct to you.

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.

PUBLISHED BY: RAYNAUD’S & SCLERODERMA ASSOCIATION

112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Website: www.raynauds.org.uk Charity Reg. No. 326306

Raynaud's & Scleroderma Association © Copyright 2013. All Rights Reserved.