summer newsletter 2014

News August Issue 2014

World Scleroderma Day

Celebrating Fundraising Efforts

Scientific & Medical News

The Scleroderma Society is a registered charity: 286736

Embracing your creative side!

In this issue:

Inspired by Paul Klee

Conference Round-up

Cover Painted by

Aspa Palamidas

Scleroderma

Editor’s Note:

Scleroderma News: Welcome Page 1

In this Issue A round up of the treats we have in store for you, in

this summer issue of Scleroderma News... Front Cover. Art by art competition winner Aspa

Palamidas (pictured: left)

Pg. 2. Welcome from Susie

Pg. 3 & 4. AGM and Conference

Pg. 5 - 7. World Scleroderma Day: Be Bright, Be Blue

& Art Competition

Pg. 8 & 9. Fundraising News

Pg. 10. Hot Tips & Pregnancy

Pg. 11 & 12. Doc Spot & Treatment News

Pg. 13. Local Group News & WIN!

Pg. 14. Noticeboard & Support

Pg. 15. Contacts Art Competition results: 1st Prize (pictured

above.) Check out page 7 to see who

came in a close 2nd!

See how we all celebrated World Scleroderma

Day, on pages 6 & 7.

Hello everyone!

Welcome to this summer issue of Scleroderma News! I hope you are

all enjoying the summer sun! I am looking forward to my forthcoming

holiday to Tunisia. Those of you like myself, who suffer with

darkened areas of skin resulting from Scleroderma, will under-stand the importance of keeping the sun off your skin. Later today I will be shopping for sun creams, kaftans and sun hats!

Remember, a high factor sun cream is a holiday essential!

Until next time... Hollie x

Scleroderma News: Welcome Page 2

Disclaimer: Views expressed in Scleroderma News are not necessarily those of the Scleroderma Society, nor the

editorial Board of Scleroderma News. No responsibility or liability will be accepted, either for their contents or accuracy in Scleroderma News. Products, treatments and services on the website and in Scleroderma News are not necessarily recommended by the Scleroderma Society. The Scleroderma Society is not equipped to test and approve products,

treatments and services available to the general public. Please exercise your own judgement about whether or not the item or service advertised is likely to help you personally and, where appropriate, take professional advice from your

doctor, nurse, physiotherapist or occupational therapist before buying or trying something.

Welcome! Here comes the sun…

Summer is always a busy time for the Society, with lots of summer fundraising and events, our annual AGM and con-ference, and of course World Scleroderma Day on 29th

June. This year, we celebrated WSD with a new campaign, “Be Bright, Be Blue”. Since the FESCA World Scleroderma Day theme this year is 'turning toward the sun', we decided

to embrace this by encouraging everyone to wear their brightest blue to show support for individuals diagnosed with scleroderma and raise awareness of the condition. The

theme ‘Turning toward the Sun’ was inspired by Paul Klee’s 1933 sunflower piece. We also had a presence at the Royal Free for our Be Bright, Be Blue campaign on 26th June,

which was well attended by visitors, patients and medical

staff.

On 3rd July, we held a WSD celebration and education event in Bath in partnership with the Raynaud’s and Sclero-derma Association. The event was developed in partnership

between the RSA and the Society, and had both patient-focused and clinician-focused content. We also launched an artwork competition this summer, and this newsletter is

indeed based around the theme of creativity. We invited individuals to produce an artistic piece to symbolise what this year’s WSD theme means to them. Artwork was dis-

played at the WSD Celebration in Bath also at our annual conference on 19th July in London and features as the cover

of this edition of Scleroderma News.

The Society is flourishing with fresh and modern ideas being introduced by our inspired and highly motivated team in the

office, Amy Barrick, Amy Baker and Chloe Kastoryano, complemented by the outstanding efforts of all our volun-teers as well, who continue to support the Society in so

many ways, from the helpline, to local groups, to fundraising, and local events, or to participating in the review of litera-ture, participating in research requests, and attending events

on behalf of the Society. The number of volunteers giving

their time and energy to the Society continues to increase

and remains an impressive strength of the organisation.

Steve Holloway, one of the Society’s longest-standing and dedicated volunteers

has recently resigned from his role as trustee, and we are sure everyone wishes to join us in thanking him

for the incredible length of committed service and dedication he gave the

Society for so many years.

We are always very pleased to hear from anyone who wishes to volunteer for

the Society in any way, be it from reviewing literature, run-ning an event, becoming a trustee, offering a professional skill, or helping in any other way you feel you could offer.

Amy Baker would be pleased to hear from you! Telephone: 020 7000 1925 or email:

[email protected]

Best wishes for a lovely summer,

Love from

Susie

x

Above, left to right: Paula Lovelock, Liz Holloway & Lorna Worboys

Below, left to right: Prof. Ariane Herrick, Prof. Chris Denton, Prof. Jacob Van Lar, Dr. John Pauling, Sister Sue Brown & Prof. Voon Ong

Thank you to all who attended this year’s AGM and Annual

Conference. We are so pleased that so many of you were able to attend and found the day extremely useful and en-joyable.

The theme of the day was ‘therapies’ and speakers includ-ed Consultant Rheumatologists Professor Chris Denton,

Doctors John Pauling and Voon Ong, Professor of Clinical Rheumatology Jacob Van Lar and Consultant Nurse Rheu-matologist Sue Brown.

Due to popular demand we will be uploading speaker presentations to our website soon.

Amy Barrick, Office and Administration Manager, said: “It was great to meet so many of our members and meet the

scleroderma experts. Even though I don’t have scleroderma my-self it was wonderful to take part in the interactive activities and to further my scleroderma knowledge. I am very much looking

forward to next year’s conference and hope to see many of you at our next event!”

Scleroderma News: AGM & Conference Page 3

“Good range

of topics”

The Scleroderma Society

AGM & Annual Conference

A round up of the day’s highlights

“I learnt a lot and there

was good humour” “Good and relevant medical

professional speakers”

“Very well run and

very informative”

Scleroderma News: AGM & Conference Page 4

Above left to right: Royal Free Therapies Team & Changing Faces'Skin Camouflage Team

In addition to the sessions we had an excellent vari-ety of peripheral activities. These included Chang-

ing Faces Skin Camouflage Team and the Royal Free Therapies Team for complementary sessions

on skin care.

The Scleroderma Society’s Helpline and information teams were also present to answer any questions.

Rosemary Goodwin, Helpline Volunteer, said:

“I have been a volunteer on the Helpline since No-vember 2012 and this was the first AGM and con-ference I had attended.

Penny, another helpline volunteer, and I were avail-able on the stand throughout the afternoon to an-swer questions and provide literature. Some have

Scleroderma and others were seeking information on behalf family members.

I found the conference speakers interesting, easy to understand and extremely informative, especially as so many helpline calls concern Raynaud's. Also, of

particular interest was the work of the specialist Nurse. I often refer callers to them but I hadn't real-ised the wide range of knowledge and skills that

they possess. I don't have Scleroderma but every call I take adds

to my knowledge of the subject. I am always amazed

by the wide range of symptoms and the extent to which they affect

people. It's very rewarding, at the end of a call, to hear someone say "thank you, I appreciate your help". But actually I always feel that I should say it too, because every caller helps with my understanding

of a very difficult and complicated illness.”

A big thank you goes to the Royal Free for providing us with the

Venue, our on the day volunteers Sonia Freeman and Jane Beach, Liz Holloway and Lorna Worboys for running the raffle, and the Socie-ty’s helpline volunteers: Penny Killingbeck, Rosemary Goodwin, Paula

Lovelock and Helena Rozga.

“Loved every

second of it”

“I really enjoyed the conference and it was nice to

meet people with the same condition as myself”

We were delighted to see so many of you wearing blue during the

weekend to show your support for diagnosed individuals.

Salford Royal took ‘blue’ to the next level by taking a photo with a

thermal imaging camera (left).

Through wearing blue you raised awareness of this rare condition and awareness leads to better education and understanding of this condi-tion. The weekend raised £1,537.08 through donations and events

with more still coming in. Thank you to everyone who supported the weekend and your fundraising will be used to develop further support

resources for individuals and their families.

If you would like to top up this amount to give individuals diag-nosed a better quality of life

you can do this at: justgiv-ing.com/BeBlue or by texting BLUE40 £5 to

70070.

To celebrate world scleroderma day a variety of events

were held throughout the week. On the 3rd July the Sclero-derma Society held their first ever, collaborative event with the RSA in partnership with the Royal National Hospital for

Rheumatic Diseases, Bath. This event was held in celebra-tion of World Scleroderma Day and was an educational

event for both patients and clinicians.

The day was split in to two parts to allow for a positive learning environment with patients hearing about “What is

Raynauds, What is Scleroderma?’ (Dr John Pauling), ‘What can I do to help my Raynaud’s and Scleroderma?’ (Sue Brown) and ‘ Current and future treatment options for scle-

roderma’ (Dr Victoria Flower).

The clinician session, held in the afternoon, was by Dr Harsha Gunawardena, Dr Gerry Coghlan and Dr John Pau-ling. Dr Pauling was influential in organizing and hosting the

event and stated: “I was delighted to see so many patients and family members took the opportunity to visit us in Bath

for the World Scleroderma Day Celebrations.

It is so important to bring together clinicians and patients to share knowledge and experiences about Raynaud’s and Scle-roderma. For many present, it was the first opportunity they

had had to meet other people going through similar experi-ences of a rare disease. We couldn’t have delivered the day’s programme without the support of the RSA and Scle-

roderma Society who deserve special thanks for their hard work and support for the event. We thoroughly enjoyed hosting the event and would love to do something similar

again next year.”

Chloe Kastoryano (Project Coordinator) joint manager for

the event stated: “It was an extremely successful event, highly informative and thought provoking. The speakers were excellent at engaging the audience and feedback has

been excellent. We are extremely pleased with the out-come and are looking

forward to subsequent

joint events.’

Scleroderma News: World Scleroderma Day Page 5

This was the first year that we all became ‘Bright and Blue’ to celebrate World Scleroder-

ma Day.


29th June 2014 was

Thank you to everyone who took part in this year’s art

competition entitled “Turning toward the sun.” We were really pleased with the amount of entries received and this led to a difficult decision for our judge, Alan Brain. Alan is an

accomplished artist and teacher working within the field of

abstract art.

Aspa Palamidas was awarded our first prize of a £50 Cass Art Voucher and her painting is the front cover of this issue. Aspa spoke of her painting: “ It’s a scene of the River

Thames at Kingston, in loving memory of my husband George. George was particularly fond of the river and asked me to take our son there the day before he left us. I hope

you see something in it too; it means a lot to us.”

Megan Hewitt was awarded our second prize of a Cass Art goodie bag. Megan’s mum, Melanie, said, “As I have sclero-derma along with lupus my daughter, Megan, wanted to do a poster. The idea was that I always feel better with the

warmer weather so she thought if I flew up to the sun I

would come down all better.”

Megan was thrilled to be awarded second prize and even took her drawing and goodie bag to school for show and

tell.

We would like to say congratulations to our prizewinners

and thank you to our sponsor Cass Art and to everyone

who took part in this year’s competition.

If you didn’t manage to take part this year, don’t worry, as we will be running another

art competition next year.

This years winner Aspa Palamidas was invited to our annual

conference to receive her first prize award of a £50 Cass

Art Voucher.

Aspa Palamidas photographed with her son and the winning

artwork.

And below, Megan Hewitt pictured with her mum and

2nd prize goodie bag.

Scleroderma News: Art Competition Winners Page 6

And the winner is… Inspired by Paul Klee Art Competition

2nd

Scleroderma Evening in Portsmouth

25th June 2014, Launch of Individual Personal

Care Plan for Scleroderma Over the last few years the Rheumatology Department at Portsmouth Hospitals NHS Trust have been working closely

with their patients and other healthcare professionals and support groups to develop Individual Personal Care Plans for a variety of rheumatological diseases.

We proudly launched our Personal Care Plan for Scleroder-ma this week in conjunction with World Scleroderma Day.

This meeting was attended by patients and their family and friends (24 in total). We were also supported by Raynaud’s

and Scleroderma Association and The Scleroderma Society. Did you know, individuals living with long term conditions spend approximately 3 hours every year with healthcare

professionals ...the other 8,757 hours they look after them-

selves? Personal Care Plans are written record that the pa-tient takes ownership of and can be used in partnership

with healthcare professionals to plan and record care. This document can also help support patients to self-manage and prompt them when to seek advice.

The feedback from the pilot study of the Scleroderma Per-sonal Care Plan was positive and all the patient in the pilot

said that they would continue to use their care plan in the future.

If you like to find out more about the care plan please con-tact the Scleroderma Society office.

Paula White

Scleroderma News: World Scleroderma Day Page 7


29th June 2014 was

Summer’s Fundraising Stars

Prudential Ride London – Surrey 100 On Sunday 10th August thousands of cyclists will be taking to the closed

streets of London and Surrey to com-

plete a 100-mile cycling challenge.

The Prudential Ride London- Surrey 100 starts in Queen Elizabeth Olympic

Park with a route winding through the city and into the stunning Surrey coun-tryside. Cyclists will finish at The Mall

in central London, shortly before 150 professional cyclists race in the Pru-

dential Ride London-Surrey Classic.

We will have a cheering point in the Surrey countryside half way around the

course at Newland’s Corner where all supporters are welcome to join. But if you are in London we ask that you

look out for the sunflower shirt and

cheer on all of our cyclists on the day.

The Scleroderma Society is delighted

to introduce our six riders, taking part in the UK’s largest cycling challenge, Chris Nutland, David Pooley, Derek

Fontinelle, Mike Dolling, Steven Henny

and Victoria Bale:

Vicki My husband Martin Foley passed away at the end of last year having suffered for many years with Scleroderma of

the small bowel and oesophagus. I went on the website to get an address for the Society and there on the home

page was the call to ride the Prudential 100. I am a really keen cyclist and this was an ideal event for some fundraising

in his memory. Our family have all been raising money, from curry nights to sponsored silences and we hope to

raise between £3-4,000. I am so look-ing forward to the day, to be a part of such a huge event and to ride on

closed roads will be a pleasure. It will be an emotional day, but one I hope I will always remember and I will wear my Scleroderma Society cycle shirt

with pride and

for Martin.

David My wife, Alexandra, has Scleroderma

and I have recently taken up cycling so this seemed a perfect way of saying thanks for all the support from the

Society.

Scleroderma News: Fundraising Page 8

Having been diagnosed with linear

scleroderma and morphea when I was 11, I decided to take part in Pruden-tialRide100 to show that the uncertain

future everyone with scleroderma faces does not always end in a negative way. There were times growing up

when it looked like I might be physical-ly disabled later in life, but as my taking part in (and hopefully finishing!) the

Prudential Ride London shows, that has not been the case. Thanks to the amazing support I received from hos-pital workers and charities like The

Scleroderma Society, I lead an active life, with very few restrictions. Hope-fully I can give a bit of encouragement

to other people with scleroderma, raise some money for a worthy cause,

and raise awareness while doing so!

Steven

The Belper Games 2014

“It’s a Knockout” On the 19th July I attended The Belper Games 2014. The Belper Games is a fantastic day out for all the family, with face painting, bouncy slides, tombola's

and ice cream vans filling the fields but the main spectacle is the ‘It’s a Knock-out’ competition. 19 teams took part in this years event, with teams fighting it out on giant in-

flatables, from hopping over a giant inflatable mountain to jumping across the field on a double space-hopper before diving in to a cube filled with foam. After battling through the challenges and the rain which stayed with us for

most of the day, Blunsdon Babes (a group of local mums whose children attend St. John’s primary school) were crowned The Belper Games 2014 Champions

receiving the coveted Belper Games 2014 trophy.

Nick Wheeler organiser of the Belper Games said “The success of this event grows year on year, and we’re already excitedly planning next year’s

event. Its success it due to a very small team of committed people giving up their own free time to organise it. It’s remarkable what a small group of people can achieve when they really want to, and when they have the memory of a wonderful wife, mother and friend to spur them on. It really

is a day for everyone and the response from the general public astounds

us each year, and it’s only going to get better!”

The Belper Games are held each year in memory of Penny (Nick’s wife) who was diagnosed with scleroderma and unfortunately lost her battle

with the disease.

The Scleroderma Society had a wonderful day at the event and even met two of our members. We cannot wait to see what

next year has in store.

Thank you to Nick Wheeler, Kate Hall and Megan Wheeler for making

this event such a wonderful success and Jim and Kerry Bull who have

teamed up with Penny’s fund to raise for Ataxia UK.

Special thanks to: Sandra and Steve Matthews, Simon and Janet Blount and Tom Hallam at Belper Rugby Club. Pauline Latham OBE MP for her con-

tinued support both during Penny’s illness and after.

The committee is hoping to match last years fundraising total of £12,000. The Scleroderma News will feature the final fundraising total in a future

issue alongside the date of next years games and how to get involved.

DO YOU HAVE A FUNDRAISING EVENT IN THE PIPELINE?

PERHAPS YOU HAVE A FUNDRAISING SUCCESS STORY THAT YOU

WOULD LIKE TO SHARE WITH READERS OF SCLERODERMA NEWS?

We’d love to hear from you! Get in touch with Amy Baker, at:

[email protected] and you could be featured on this page!

Scleroderma News: Fundraising Page 9

Scleroderma News: Hot Tips & Pregnancy Page 10

The bathroom is part of our daily routine but when you have scleroderma it can become a very difficult part of eve-

ry day life.

But with Helena’s top tips, we are about to make your bath-

room routine much easier.

“I find it useful to use a wash mitt, exfoliator or long han-

dled bath brush if contractures of the hand make it difficult

to grasp things particularly flannels.”

“Chubby handled toothbrushes or better still an electric toothbrush, toothpaste tubes with large caps

instead of those fiddly little twist caps and flossing brushes or a han-dled dental flosser if like me you

have a small mouth opening or you

cannot grip dental floss.”

“My hot tip for cleaning the bot-tom of your feet in the shower.

Stand on a large soaped and wet flannel and whilst holding down with one foot wipe the other foot

back and forth until clean. Use a long handled bath brush for clean-

ing the toes!”

“I use a rubber chubby handled brush and comb. If like me

you find it difficult to blow dry the back of your hair and you cannot ask someone else to do it for you then the self grip rollers are great to use on the hair at the back of your head. Remember to take them out when leaving the house! I was

once asked what was that at the back of my head, only to find two bright red rollers. While we’re talking about funny situations I once put my dress over my head, forgot I had a

couple of rollers in and went out with them on the back of

my dress where they had self gripped!”

Patients with systemic sclerosis who plan a pregnancy for

the year 2016 may be interested in participating in an inter-national observational prospective study initiated by

EUSTAR.

Since very few studies have included large numbers of preg-

nant patients and followed them during and after pregnancy, a number of important questions remain open and need

more extensive study.

Some of the questions to be studied:

Does pregnancy alter the course of SSc?

Are different forms of SSc influenced differently n pregnancy?

How would SSc be monitored during pregnancy?

To answer these important questions, a 2 year observation-

al study of pregnant women with SSc will be conducted with

the aim of studying 100 pregnancies in SSc women.

If you are interested or would like to find out more please

contact: [email protected]

This project is supported by FESCA and EUSTAR.

In the Bathroom: Hot Tips

IMPRESS 2 Study: International Multicen-

tric Prospective study on Pregnancy in SSc

DOC SPOT Chris Denton is a Professor in the Centre for Rheumatology at the Royal

Free Hospital in London and runs the Scleroderma Clinic. His major re-

search programme spans both clinical and laboratory Scleroderma trials.

I am lactose intolerant, what are the

alternatives to medication in tablet/capsule form? Are these readily avail-

able?

You should discuss this with your

pharmacist as there are generally forms of most common medication that do not contain lactose including

tablet, capsule and liquid forms in

many cases.

The tops of my hands are very itchy and I get tiny hard spots, which are

not visible but I can feel them...also the tops of my feet, top of big toe and around my ankles are very itchy too - no spots but sometimes it looks like I

have a nettle rash on the top of my toe and also on the backs of my wrists. The itching is always on both

sides at the same time. Any ideas

please?

This symptom sounds like urticaria,

which is the result of release of hista-mine and other factors in the skin - it can be provoked by temperature

change, scratching or sometimes in

association with a poor circulation. It

can be helped by anti-histamine creams or tablets (although these may cause drowsiness). Some connective

tissue diseases are associated with urticaria and so if this is a severe and persistent problem you should con-

sult your doctor as a specialist der-matology or rheumatology referral

might be appropriate.

My scleroderma took a long time to diagnose as it only showed up on

scans and not with blood tests. Is this

always the case?

Since scleroderma is uncommon and can be very different in pattern or

extent, sometimes with only mild skin changes, it is not unusual for diagnosis to take some time, especially in mild-

er or atypical cases. Many doctors only see a very few scleroderma cases in their clinic and naturally focus first

on commoner diagnoses. Eventually most (more than 90%) patients have abnormal blood tests, especially anti-

nuclear antibodies (ANA) but these

may take time to develop.

I have Raynaud's and scleroderma and have been on the same medication

for some time. Recently I have devel-oped very painful mouth ulcers and wonder if there is a connection? I have reread all the patient infor-

mation leaflets but I can't find any

reference to mouth ulcers.

Mouth ulcers are common but can

occur as a side-effect of some medi-cations given for scleroderma such as methotrexate and other agents. I

would recommend discussing this with your doctor – you may need a monitoring blood test and sometimes

mouth ulcers due to methotrexate can be reduced by taking folic acid supplements. However mouth ulcers can occur for other reasons or as

part of an underlying con-

nective tissue disease.

Scleroderma News: Doc Spot & Treatment News Page 11

Back in the days of Black&White Photography, when our trusty computers started misbehaving, they were subjected to the infamous Three-Finger Salute known as Ctrl-Alt-Delete or

“System Reset”. Well, the medical equivalent of this could be considered to be Autologous Haemopoietic Stem-Cell Trans-plantation or HSCT for short, where the basic idea is to shut

down the body’s immune system and rebuild it again from scratch. This procedure has been used for quite some time now in the treatment of cancer, so that the technology for

using it is well established; but it was not until 1997 that treat-ment was first given to scleroderma sufferers. So this confer-ence has been fortunate indeed to have Professor Jacob van Laar present the final results of a 12 year trial he has conduct-

ed, commencing in 2001 and involving 156 patients with re-cently diagnosed diffuse cutaneous sclerosis. It has compared the 4 year outcomes of one group receiving HSCT and a con-

trol group receiving the then current treatment of choice, cyclophosphamide. Having described the mysterious proce-

dure that is HSCT, Professor van Laar proceeded to show us the graphical highlights of the trial, with the HSCT results sig-nificantly outperforming those of cyclophosphamide. These

charts were comparing the number of events (death or organ failure) on an ongoing year on year basis, with the overall score for HSCT being 22 events versus 31 for cyclophospha-

mide, a substantially significant improvement. What was also very interesting about these numbers was that for the first year, cyclophosphamide was actually rather better (8 v 13

HSCT) with the HSCT results greatly improving during years 2 through 4 (23 v 9 HSCT) One other very interesting observa-tion about these results was that smokers represented some 70% of the overall fatalities. In conclusion, Professor van Laar

said that although the cost of HSCT has dropped from some £100K to nearer £40K, work still needs to be done to identify those patients at first year risk from an HSCT procedure.

Ctrl-Alt-Delete the immune system, to fix Scleroderma ...why didn’t I think of that! Roger Sinclair-Clarke

Promising New Treatment : The Results Are In!

Scleroderma News: Treatment News Page 12

The Style Angel is a personal shop-ping service designed with you in mind! Helping you to build a look that

suits you shape, lifestyle and budget. Advice on new looks and current trends and what to wear to look to

feel great! Half day or hourly sessions available.

Exclusive 20% discount for all Sclero-derma Society members with code sclero714

Veil Cover Cream was first formulat-

ed in 1952 and was pioneered to be used to cover post-operative scars, now “our cover cream is widely rec-

ommended in hospital dermatology and skin clinics as well as leading beauty salons” (Veil Cosmetic Cam-

ouflage). Read about Alexandra Marler who

tested cover cream as part of the

#veilchallenge on Veil’s website:

http://www.veilcovercream.com.

An exclusive 20% discount is available for all Scleroderma Society members, this discount is valid until the

31/08/14. Claim your discount by using the code VCCSC14 online.

A Look at Complementary

Therapy

The Complementary Therapy service

for patients was started at the Royal Free in 1992, by Keith Hunt MBE, as a voluntary massage service for re-

ferred cancer patients. Keith expanded the service consider-

ably and became the full-time paid co-ordinator for Complementary Thera-py, leading a team of qualified thera-

pists which includes permanent staff and volunteers.

All patients, with any medical condi-

tion, can be considered for treatment from the team.

Complementary therapy is not used an alternative to conventional treat-ments but is offered alongside.

Massage Therapy is offered by the Royal Free Hospital Complementary

Therapy team. The intended benefits of this therapy are to promote relax-ation, reduce anxiety, and to ease

symptoms such as pain, nausea and

poor sleep patterns. Help with your coping strategies.

If you would like to find out more about the team visit:

https://www.royalfree.nhs.uk/services/services-a-z/complementary-therapy/

Veil Cover Cream

Exclusive 20%Discount for Society Members

Exclusive Discounts for Scleroderma Society Members

The Style Angel

Personal Shopping

Service With a

Difference

http://www.veilcovercream.com



Can you solve the riddles?

Page 13

Break Time

Enter The Stene Prize Competi-

tion and WIN €2 000!

We invite people with rheumatic and musculoskeletal diseases (RMDs) to write about their personal experiences

and the role that health professionals have played in supporting them to live as independently as possible, achieve

important personal goals, and to take control of their lives. We want to hear

all your stories.

What have you been able to achieve and how? Each small step counts and

we look forward to hearing many inspi-rational stories. In this context, health professionals may include your nurse,

your primary care doctor, your rheu-matologist and other specialists, your physiotherapist, your psychologist, in

brief any health care team around you.

We would also like to hear what could

be improved in your country and if you have access to all the health profession-als you need. What should an ideal

relationship between health profession-

als and people with RMDs look like?

The Stene Prize winner will be invited to attend the Opening Plenary Session

of the EULAR Congress in Rome to be awarded their prize of € 2 000. EULAR provides the winner with travel to

Rome and hotel accommodation in Rome for up to 4 nights as well as an

invitation to the Congress Dinner.

Deadline: Monday 15 December. To find out more or to enter please

contact the office.

East Anglian Group News

Our next meeting is on Saturday

30 August 2014 at 2.45 pm in Felixstowe. We will be looking at ‘Understanding and Managing

Scleroderma’, the Scleroderma Society publication. As we mostly meet in this area of Suffolk, we

are effectively a Suffolk Group but we know there are now quite a lot of people with sclero-

derma in Norwich and the sur-rounding area. If you would be interested in a get together in

Norwich, would be prepared to organise it or can offer accom-modation. Please contact Jacky March on 01394 286 637, if you

would like more information.

Newcastle Group News

I'm very pleased to tell you that Lindsay

Wilkinson has agreed to cover Newcas-tle & Northumberland as a local Group

Contact for the Scleroderma Society.

She was first diagnosed with morphoea & Rayaud's in her early 20s but wasn't diagnosed with systemic scleroderma

until 2010, having previously been told

she had ME.

Lindsay has not been able to work for a

while but is hoping to be back in em-ployment once she has completed re-

training as an Adult Education teacher.

Good luck in the future, Lindsay, &

many thanks for joining the team.

Newcastle area, check out Lindsay on

the Newsletter Contact list.

Competitions & Local Support Group News

A simple way to show your support this Summer!

The Scleroderma Society has adopted the sunflower to represent our organisation, sunflower pin badges

are available for a small donation, to buy one please visit our website or contact the office.

Scleroderma News: Local Group News & WIN!

CREATIVITY

What invention lets you look right through a wall?

NOT MUCH OF A SPORT

What can you catch but not throw?

LIGHT AS A FEATHER

What is as light as a feather, but even the world's strongest man couldn't hold it

for more than a minute?

If you have any news you would like to share with members

of The Scleroderma Society, please do not hesitate to

email them to: [email protected]

Notice board Local Contacts and support services

Inspirational Quote of the Season “Everything has its wonders, even darkness and silence, and I learn, whatever

state I may be in, therein to be content.” - Helen Keller, American Author.

Bedfordshire

Rita Boulton [email protected]

01767 312 544

Buckinghamshire & Hertfordshire

Marilyn York mari-

[email protected] 07702 592 387

Burton on Trent

Helen Nutland hel-

[email protected] 01283 566 333 x5247

Cornwall

Alex Pooley [email protected]

01736 755 845

County Durham & Teeside Jessie Pickering 01388 527 840

Derbyshire, S.Yorkshire,

Staffordshire & Cheshire Lynette Peters


Derbyshire, S.Yorkshire,

Staffordshire & Cheshire Diana Twigg


Devon

Anne Sheere [email protected]

k 01752 338 156

East Anglia Jacky March


East Midlands

Cheryl Darch cher-


East Sussex

Rosanna Clifton rosan-


East Yorkshire

Lynn Hind [email protected].

uk 01482 354 312

Essex, Kent & East London Amanda Thorpe

[email protected]

01702 344 925

Hampshire Tracey James


Ireland

Michelle McGill [email protected]

08183 63 999

Lancashire & North West Yorkshire

Sheila Procter [email protected]

01282 42 9004

Merseyside Helen Lingwood

[email protected]

01512 801 194

Newcastle and Northumber-land

Lindsay Wilkinson lind-


North East Scotland

Susan Wilson su-


North Wales

Kate Owen [email protected]

k 01492 515 834

Oxfordshire & Berkshire Melanie Bowen

[email protected]

01865 517 033

Powys & Shropshire Jennifer Ames

[email protected]

k 01544 267 988

Scotland Frances Bain


Somerset & Gloucestershire

Judith Foster ju-


South London Celia Bhinda ce-


South Wales

Belinda Thompson belin-


Surrey Nicky O'Shea


West Midlands

Jane Beach [email protected]

01527 459 552

West Sussex Lesley Dodd

[email protected]

01903 753 971

West Sussex Jo Frowde


Wiltshire & North Hampshire

Lynn Morton [email protected]

01980 863 444

Join us on

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sclerodermauk

Online Support

We have set up a new and complementary community

powered by Health Un-locked. If you are a Face-book user you may have

seen advertisements pop up on your page. Why not give both forums a go? Have a look around, meet and sup-

port other people with

Scleroderma.

Local Group Co-ordinator: Liz Holloway [email protected], 01243 539466

Scleroderma News: Notice board Page 14

mailto:[email protected]
























































Contacts

Susie Hoare susie@

sclerodermasociety.co.uk

Helena Rozga Helena@


Office & Administration

Manager: Amy Barrick

020 7000 1925, amy@


Helpline Manager: Helena

Rozga, Helena@


Event enquiries: Amy

Baker, fundraising@


Specialist Nurses:

Nurse led lines for general inquiries only, in non emer-gencies. If the nurse is una-

vailable please leave a mes-

sage:

Helpline: Although The

Scleroderma Society can

not offer medical advice,

they operate a free helpline, offering a kind ear. We will help in any way we can be-

tween 9.00—21.00 every

day. Call 0800 311 2756.

Carer Support Contact:

Michael Thorpe 01702 344

925, [email protected]

Specialists

Bath Royal National Hospi-tal for Rheumatic Diseases:

Sue Brown 01225 428 823

Belfast Ulster Hospital:

Audrey Hamilton

02890 561 310

Dundee Ninewells Hospi-

tal: Steve McSwiggan

01382 383 233

Leeds Chapel Allerton Hospital: Elizabeth Tyas

01133 923 035

Liverpool Aintree Univer-

sity Hospital: Jan Lamb

01515 255 980 bleep 2231

London Royal Free Hospi-tal Scleroderma queries: 020

783 02326 and Pulmonary

hypertension:

020 7472 6354

London Royal Brompton

Hospital Respiratory

queries: Lucy Pigram

07758 894 3175

Manchester Hope

Hospital: Liz Wragg and

Catherine Lambe

01612 060 192

Newcastle Freeman

Hospital Scleroderma

queries: Karen Walker

01912 231 503 and

Pulmonary hypertension:

Rachael Crackett /

Julia De Soyza

01912 137 418

Portsmouth Queen

Alexandra Hospital:

Paula White / Julie In-

gold

02392 286 935

To find more

specialists in your

area visit the

website or contact

the office.

Scleroderma News: Contacts Page 15

Connecting you to Scleroderma Professionals,

groups and nation wide support networks

Scleroderma

News

Write to:

The Scleroderma Society

Bride House,

18-20 Bride Lane,

London

EC4Y 8EE

Phone us:

020 7000 1925

Email the editor:

Hollie@scleroderma

society.co.uk

Proof Reading:

Rosemary Goodwin

Printing & Publishing:

Jarvis & Company

The Scleroderma Society is a registered charity: 286736

summer newsletter 2014

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