News February Issue 2014

Scientific & Medical News

More Inspirational Stories

Make a positive change!

Scleroderma Readers Top Tips

New Year New Attitude

10 NEW YEARS RESOLUTIONS

YOU SHOULD KEEP PAGE 5

KEEP ON MOVING PAGES 14-15

As I write this on New Year’s day, I look forward to the

year ahead with great excitement, despite the howling wind

and pouring rain outside! Looking back to 2013, we ended

the year on a high with the appointment of our fundraising

and volunteer coordinator, Amy Baker, who joined us in

November and many of you will no doubt have had the

pleasure of speaking and being in contact with her already.

We go into 2014 in an even stronger position as an organi-

sation, which will be further enhanced by the work of our

new project coordinator, Chloe Kastoryano, who will be

starting at the end of January, working two days a week on

much-needed projects and taking some of the burden of day

-to-day work off the trustees, whose time is needed else-

where in the Society management.

We continue to build our collaboration with the Raynaud’s

and Scleroderma Association, and will be supporting their

upcoming Raynaud’s Awareness Month in February. Chloe

will be leading us through our leaflet updates in collabora-

tion with the RSA. Our new leaflets will be jointly produced

with the costs shared by both organisations.

The next World Congress on Systemic Sclerosis in Rome is

fast approaching at the beginning of February and we’ll pro-

vide reports from that in the next newsletter. It is always a

very useful occasion with lots of interesting and relevant

information on advances into medical and scientific research

regarding scleroderma.

Finally, an extremely warm thank you from everyone at the

Society to all our members and supporters whose unprece-

dented goodwill and energy throughout 2013 enabled the

Society to continue its important work and fulfil its charita-

ble objectives of providing support, awareness and research

into scleroderma.

With warm regards and best wishes for the new year,

Susie

Editor’s Note: Hello everyone! Happy new year, and wel-

come to this winter issue of Scleroderma

News. This time of year is about casting out

the old and welcoming in the new, there is no

better time for an attitude adjustment. This

issue could change your life!

The end of 2013 brought with it a tragic shock,

with the death of my friend Richard Aransibia, known to many in the Scleroderma

Community. You can read about his journey on pages 6-7. Richard was an opti-

mist, a true inspiration. In 2014 I will be living my life as he would have, to the

fullest! I hope you enjoy reading my new year’s resolutions, on page 5! Perhaps

you have written your own resolutions, or compiled your own 2014 ‘to do’ list?

Why not share this and much more with other readers in the next issue of Scle-

roderma News which will be out in June? I am always interested in hearing what

you’ve been up to! As always, deadline for content, the first of the previous

month . Email me on hollie@sclerodermasociety.co.uk. Until next time…

Hollie xXx

The Scleroderma Society has

adopted the sunflower to repre-

sent our organisation, sunflower

pin badges are available for a

small donation, to buy one

please contact: amy@

sclerodermasociety.co.uk

Scleroderma News: Welcome Page 2

Welcome! Happy New Year! Welcome to our first edition of Scleroderma News 2014!

Scleroderma News: News Page 3

Helpline News:

Continued Professional Development

Our helpline goes from strength to

strength. We have seven well-trained and

very experienced volunteers now, most of whom are able to speak first hand about

Raynaud’s and Scleroderma. When callers

ring the helpline they don’t want to listen

to our ailments though, what they want is

help with their own individual worries and

concerns. Not all callers suffer with Sclero-

derma and Raynaud’s. They may be calling

about a friend, a loved one, or a relative.

Often we receive calls from GPs and clini-

cians. For example, physiotherapists and

occupational therapists who enquire about

the disease, or a specific issue to enable

them to improve the quality of life for

someone that they are working with or

treating. We are always looking for ways

to improve our services through training or

other accredited development. Recently,

Rosemary and Helena attended a Helpline

Partnership conference in Peterborough.

The event, for the helpline sector, brought

together many organisations to share best

practice and knowledge. A good example

of this was from Loughborough University

Helpline Research Unit who talked about

their research into “improving helpline

interactions”. This was a very engaging and

informative session and we brought back

lots of information that can be passed on,

to continue improving our services. Another

session was on Helpline Self Evaluation

where we got to talk and get down to some

very practical work thinking, challenging, and

mapping out what each organisation’s help-

line really wants to achieve. We came away

with some groundwork for development

with our volunteers at the next training

session. Other sessions were on “handling

emotions”, “difficult calls”, and “best prac-

tice in supporting volunteers”. It was a busy

and informative conference and meeting

other charity helpline volunteers and staff

added to the success of the day. Watch this

space for more news and progress.

If you are interested in volunteering on the

help line p lease contact: hele-

na@sclerodermasociety.co.uk.

If anyone you know is need of support or advice about scleroderma then please pass

on our helpline number: 0800 311 2756

Local Groups News: “I am delighted to be able to welcome

several new local group contacts in various

parts of the country. Alex is in Cornwall,

Anne is in Devon, Lynette joins Diana in

the Derbyshire area, Jessie is in the North

East & Jane is in the West Midlands. It is

wonderful to have so many counties cov-

ered & I must thank all of the above very

much indeed. Because there are so few people in the UK with scleroderma, it is

not an onerous job & I hope the new con-

tacts will enjoy it. Check the website or

the list in the newsletter to see if your

own area is covered, otherwise contact

me! (page 23) Best wishes to all members

for 2014.” Liz Holloway

PHD Research with UCL The trustees of the Scleroderma Society

have decided to participate in the co-

funding of PhD research in co-operation

with UCL (University College London).

We are excited about this opportunity to

become directly involved in PhD research

needed in the field of scleroderma. PhDs

usually last for three years, during which

time we will report back with updates and

news from the research and the labs. The

research at UCL will be supervised by

Prof. David Abraham and Prof. Chris Den-

ton who specialise in scleroderma re-

search. The Society will receive recogni-

tion on presentations given at scientific

meetings and symposia and in any publica-

tion arising out of the work, which will

contribute to the research puzzle in trying

to better understand and develop treat-

ments for scleroderma. We are very excit-ed about this opportunity to become in-

volved in research at grass roots level and

look forward to visiting the labs and re-

porting back on the experience. We will

let you know when the exact subject of

the PhD is decided and when it will start.

Society News The Latest News - Winter

Welcome Amy

“I am Amy Baker and I have been with the Scle-

roderma Society for three months now as a

Fundraising and Volunteer Coordinator. Since

graduating in 2010 I have worked for several

diverse charities in a similar capacity. I thorough-

ly enjoy working within the charitable sector and

look forward to bringing my skills and

knowledge to the Scleroderma Society over the

coming year. I have always enjoyed volunteering

and fundraising and have taken part in many

events in my spare time, from reaching Everest

Base Camp to jumping out of a plane, so what-

ever event you may be planning please get in

touch for advice and a helping hand. I look for-

ward to hearing from many of you during 2014.”

Scleroderma News: Inspire Feature Page 4

Paul Klee was born in Switzerland to a

German father and Swiss mother in

1879. He was a talented artist that, the

Tate recognise, cannot be described as

having one style of art – most of the

paintings we saw yesterday were so

different.

Klee lived through many difficult times.

He struggled to get recognition as an

artist. He never had the security of full

time work because his art was seen as

radical but it was also due to Klee

living in a time when there were politi-

cal, social and economic changes caus-

ing hardship to him and many others.

What we did learn about Klee was his

determination to work through hard

times and we both left the exhibition

with a great deal of respect for a great

artist.

As mentioned earlier Klee’s art has

various different styles. There are

many paintings that are dark and show

distorted figures and shapes. Others

are bright and very colourful, whereas

some are comic, highlighting Klee’s

great sense of fun.

Klee had his first exhibition in 1910

but was told by the curator that the

visiting public largely disliked his art

work. Klee was not put off by that and

continued to produce paintings and

was finally being recognised as an artist

in 1920. Despite having no teaching

experience he began teaching at the

famous Bauhaus in Germany in 1921

and became known world-wide by the

1930s. Despite his recognition it did

not give Klee any stability. It was very

sad to learn that Klee had to flee Ger-

many in 1933 and that the Nazis de-

stroyed much of his art work describ-

ing it as ‘degenerate’ art.

In 1935 Klee became seriously ill and

struggled with the serious symptoms

of scleroderma. his struggle with scle-

roderma is very obvious, in his works

from that time. There are many self-

portraits which show Klee coping with

the condition and although we were

dreading seeing some of Klee’s final

works (as we believed it would be

very sad) we were both in for a great

surprise. The final room at the exhibi-

tion starts by stating that Klee fought

his ‘illness’ and although he knew he

was very seriously ill did not want his

final paintings (in 1939 and 1940) re-

flecting his ill health and he produced

the most beautiful and vivid work. It

took all his strength to produce these

paintings when he felt so awful but, we

feel, they show Klee’s true character

and genius. His final painting was called

‘Vase of Flowers’ and shows the most

beautiful display of brightly coloured

flowers with huge blooms in a glass

vase. It was a wonderful end to a fasci-

nating display of imaginative art work

which at times was upsetting to see.

Klee died on the 29th of June 1940.

We would recommend this exhibition

to anyone who wishes to see how a

great artist overcame many hardships

and coped bravely with scleroderma

to produce some beautiful paintings.

By Tracey James

A Review of Paul Klee: Making Visible

16th October 2013 – March 2014, Tate Modern

“Yesterday, the 2nd of January 2014, I went with my mum to see the Paul Klee exhibition at

the Tate Modern in London. We were both at the Tate in the summer and when we learnt

that the Klee exhibition was going to be shown we were, from that moment, both very keen

to see it largely because of the connection with scleroderma – Klee had the condition. My

grandfather was diagnosed with scleroderma at the end of 2000 (the same time my mum

discovered she was having me) and through our research on Paul Klee we have discovered

many uncanny similarities between my granddad and Paul Klee which gave the trip a very

personal perspective.”

Florence James (aged 12)

Scleroderma News: Cover Story Page 5

1. Laugh every day:

Admit it, at

some po in t

we’ve all experi-

enced laughter

as the best medi-

cine. Patch Ad-

ams once said:

“ R e m e m b e r

laughing? Laugh-

ter enhances the

blood flow to the body’s extremities and

improves cardiovascular function. Laughter

releases endorphins and other natural

mood elevating and pain-killing chemicals,

improves the transfer of oxygen and nutri-

ents to internal organs. Laughter boosts

the immune system and helps the body

fight off disease, cancer cells as well as

viral, bacterial and other infections.”

2. Spend time with family:

Princess Diana once said: “Family is the

most important thing in the world.” In

2014 we should all take some time to let

our families know how much they are

loved and appreciated beyond words.

3. Appreciate your friends:

I have a close group of best friends who

have been by my side throughout the dark-

est and happiest points of life, they have

always been exceptional, and continue to

never stray more than a phone call away.

However, like so many, when it comes to

those further afield, I am guilty of leaving it

too long in between catch ups! Life moves

at an alarming pace, and that’s why in 2014

we should all make a conscious effort to

see our distant friends!

4. Have some YOU time!

Do something that’s all for you! Whether

it is going for a stroll in the park, or taking

ten minutes out of your day to have a qui-

et cup of tea and a read of a good book.

Find some time to be alone. I have found

that since I started dedicating some time

to be by myself, I am an altogether calmer

more composed person. Give it a try in

2014!

5. Do something unfamiliar!

In 2014 why not try mixing it up a little?

Try doing the opposite of what is expected

of you! I’m not suggesting we all hurtle out

of a plane or unite in a synchronised

bungee jump, (though if you’ve got it in

you – fabulous!) But why not attend an

event that you’ve previously thought might

not be your cup of tea – you may be sur-

prised!

6. Join a support group:

Scleroderma can be an extremely lonely

illness, but it doesn’t have to be. As sup-

portive as friends and family can be, and

with all the compassion in the world, no

one truly empathises with your scleroder-

ma journey like a fellow sufferer. In 2014,

why not embrace the opportunity to make

new friends through a Scleroderma sup-

port group? From pages on social media

sites like Facebook (search for the Sclero-

derma Society) to specialist health based

social networks (try inspire.com) there are

people out there, just like you, willing to

offer unprecedented support and advice,

free of charge! You can also see page XXX

to discover your nearest local group.

7. Get fit!

So, the clock

hasn’t finished

chiming twelve

and I’m already

subscribed to my local gym,

with the best

intent at the

forefront of my

mind, but deep

down knowing

I’ll have can-

celled it by February! Let’s make 2014 the

exception. Exercise is particularly im-

portant for people with Scleroderma: Stud-

ies have found that people who are physi-

cally fit have increased assertiveness, bet-

ter perception, and are able to make

sound decisions. They are more confident

in their ability to do things. Emotionally fit

people are more ‘stable’ and less troubled

by life's challenges and disappointments.

People who are fit are more independent,

have a better memory and more frequently

experience a positive mood. Needless to

say, they also have a better body image and

heightened feelings of well-being. In 2014

why not try a new exercise regime that

suits you and your needs?

8. Help a charity!

I will never forget my first fundraiser. The

gratification I felt knowing that I had helped

so many others, is a feeling that should be felt by all in 2014. Organising a fundraiser

is not as daunting as it might seem. There

are so many ways in which you can arrange

to collect money for your chosen charity,

from simple ‘whip rounds’ (we can provide

collection boxes) to events such as walks,

bike rides and marathons, sponsored beard

shaves, leg waxes and hair growing, to

quizzes, discos, auctions, raffles and fashion

shows. The possibilities are endless. If you

would like to support the Scleroderma

Society, in ANY way, please email fundrais-

ing@sclerodermasociety.co.uk.

9. Speak your mind!

Morrissey once

sang: “Don't

leave it all un-

said, somewhere

in the wasteland

of your head.”

Embrace your

ability to ex-

press yourself! If

you feel passion-

ate about something, anything, speak up!

Why not offer feedback? Leave a comment

on a post? Write a letter or keep a blog?

Finally, and perhaps most importantly.:

10. Say YES more:

There are so many reasons why we say no

in life, so many reasons why we shouldn’t

do things, and perhaps only one why we

should – life is too short.

2014 is your year! Make it count!

Love and best wishes,

Hollie

10 New Year’s Resolutions

For a Happier Scleroderma Life

My Scleroderma Journey:

‘We all shine on, like the moon,

and the stars, and the sun...’ John Lennon America is home to an estimated 80,000

to 100,000 sufferers of Systemic Sclero-

derma. Sounds like a relatively large

number huh? Not when you consider

that 314 million people call it home. A

reliable source informs me, that are less

than 0.03% people in America suffering

with Systemic forms of Scleroderma.

It’s impossible to say how many people

are battling Scleroderma globally. Per-

haps all we can say with any certainty is

that it is rare. Couple that with this:

How many people does one meet in a

lifetime? Studies have estimated the

number to be an average of 10,000 peo-

ple. What are the chances of one of

those people being a sufferer of Sclero-

derma? The number is getting smaller

right? Finally, consider this. What are the

chances of meeting a fellow sufferer of

Scleroderma, at home in Essex, in a

completely, unrelated social setting?

I didn’t believe in fate, until the day I met

Richard Aransibia. It was the spring of

2011 when I was introduced to Richard

through a mutual friend, who at the time

didn’t comprehend that we were suffer-

ers of the same illness. We were watch-

ing a wrestling match, when Richard

casually commented that he was due a

blood test the following day. I asked him

what i t was for and he sa id

‘methotrexate’ - you could have

knocked me over with a feather as I

realised we were both having our blood

monitored for the same reasons!

I learned that when he wasn’t working as

a Specialist at the Apple store, skate-

boarding, playing Frisbee (and as he put

it “generally running about doing things I

look a little too old to do,”) Richard, like

myself, was a patient at The Royal Free

Hospital in London. We were both un-

der the care of Professor Christopher

Denton. For years to come we would

meet up during hospital stays and visits,

to share a bottle of fizzy lime water and

have a chat. Richard explained to me

that he first noticed that something was-

n’t right when his knees became stiff

when crouching. Speaking to me in the

summer of 2013, he told me: “I thought

nothing of it as I skateboard, but soon

after I noticed swelling in my fingers at

work. I'm a pretty healthy guy so I ig-

nored it, thinking it would go away. The

first time I knew something was really up

was the gradual increase in fatigue when

moving around. In hindsight, this was

odd as my mobility and range of move-

ment was still completely intact.” Rich-

ard went to his GP who quickly read the

symptoms as Scleroderma due to the

fact he had seen a woman with it before,

over a decade prior! Richard was re-

ferred to a specialist who diagnosed

Systemic Diffused Sclerosis. Richard

explained “this meant Scleroderma that

was not localised. It affects multiple as-

pects of the body inside and out. Name-

ly, tightening of the skin, contractures of

the limbs, Raynauds, poor circulation,

myositis (inflammation of muscles

around internal organs) gut problems,

and weakness etc.” Over the course of

three years Richard visited his local hos-

pital in Basildon, and London’s Royal free

where he received a multitude of treat-

ments. He said: “Cyclophosphamide

helped, as did laxatives, but everything

else, like steroids, immunosuppressors

and antibiotics must simply manage scle-

ro as I didn’t feel any improvement after

taking them.”

Richard rapidly became a huge source of

strength to me. He was never more than

a text message away, even if I needed

someone to confide in at 4am! It was

during one of these late night heart-to-

hearts that I asked him what he thought

his future looked like, to which he re-

plied “Sclero is supposed to level out

and start to revert. That’s what I am

looking forward to.” Richard had tips to

help me cope. One night he told me:

“No matter how tired you get, don’t

give up, push through the tiredness.

Don’t rest in bed too much like I did.

Stretch your limbs and fingers a lot.

Have hot baths, wear gloves in cold

weather even if it’s not THAT cold.

Keep your chin up, even if things start to

get difficult…” I remember his reminder

that “you’re already fighting it so it

won’t hit as hard.”

Richard was famous for his (sometimes

unusual) sense of humour; “Every con-

versation I have, somewhere in there, is

Richard.” Said his friend, Tony Wells;

“The jokes we make and the way in

which we make them, at the very core

of it all, is Richard. His comical nature

was contagious and his timing

of punch-lines was impecca-

Scleroderma News: Inspire Feature Page 6

ble. He had the best sense of humour

we have ever come across. If you were

in a bad mood before seeing him, within

minutes you'd be smiling from ear to ear

and you'd forget why you were upset in

the first place.”

“Scleroderma is bloody *** isn’t it? If it

was a person I would have definitely

deleted them off Facebook,” Richard

complained to me one day. I couldn’t

help but smile. Richard had a way of

making serious problems feel less in-

tense.

In 2013 Richard grew increasingly frus-

trated with Scleroderma as it began to

limit his ability to drive his prized Audi

RS5. He once confided in me that a lack

of mobility prevented him getting to and

from the vehicle. He said: “Fatigue stops

me driving far. Weight loss means I need

a cushion. Contractures mean I am not

as nimble on the wheel. This is quite

frustrating, but when I can manage it,

driving is a huge release for me.” I’ve

never met someone as passionate about

cars as Richard. In the summer of 2013

he arranged a surprise for his mum, Ber-

nice, when he gave her BMW a makeo-

ver. Uploading the photographs to Face-

book, he wrote: ‘Expecting just refur-

bished wheels, Mum is kinda shocked to

see zenons, running boards, chrome

grille, a roof aerial and pearl effect vinyl

body wrap - And a Bluetooth hands-free

kit & iPhone charger. Result.’

Richard valued the people around him,

and once explained to me how his mum

was his main source of strength, he said:

“I guess the person who has made the

biggest difference, even though we get

under each other's toes a lot, is my

mum. She has been so helpful and I

should be grateful for that. She must be

as stressed as I am in a different way.”

He said: “My friends and family are very

supportive. Some of my friends are very

active in the scleroderma community

and that’s inspiring.”

But he was also, himself, extremely en-

couraging of his own friends. Upon

learning of my new role as Editor of

Scleroderma News, Richard expressed

an interest in sharing his personal story,

in order to spread scleroderma aware-

ness.

In October 2012, he once again showed

me his support when he discharged him-

self from a hospital stay to attend a char-

ity autograph auction that I had organ-

ised in aid of The Scleroderma Society. I

was shocked and delighted to see him

attend, and I will never forget his kind

words of appreciation. Sadly, and unbe-

known to so many, that was to be the

last time I saw my friend.

Richard died on the 30th October 2013,

exactly one month after his 26th birth-

day. His Mum, Bernice, was by his bed-

side at the Royal Free Hospital in Lon-

don.

Richard enjoyed reading and talking

about science. He found it fascinating. ,

whether it was strange facts, astounding

accomplishments or pondering the mys-

teries of the Universe. Tonight, if you

happen to look up at the night sky, like

Richard so often did, you may notice

that there’s one more star watching

over us.

Do you have a story to tell? Do you want to share it with others? Email: holllie@sclerodermasociety.co.uk

Scleroderma News: Inspire Feature Page 7

Richard’s friend, Tony Wells, said: “There will never be another like him and for that we are eternally

grateful. A truly remarkable human being with many good traits and few flaws. To say he influenced all

of us is an understatement. We've never met anyone who loved life as much as he did, and we don't

think Richard realized it himself. Music, fashion, cars, sport, and films - He enjoyed all of them. He

loved all kinds of food and constantly immersed himself in the ever evolving world of technology.

Thinking back, it's hard to find anything he didn't have an interest in. We've barely begun to scratch the

surface of this incredible person, how much he meant to us, and how hollow life will be without him

here to share it. He'll be in our hearts through the good times and the bad, and that out of the 107.6

billion people to have lived, we couldn't have picked a better man to have as our best friend.”

“He used to call me Gambit and he was Wizard.” Laughs his friend Rikki Piercy: “I met Richard out

skating. We couldn't have been much older than 15, he was so healthy and a great skate border. He

was always so funny and his laugh was infectious! Everyone who knew or had met Richard always com-

mented on how full of life he was and you could never say a bad thing about him. You could always find

something in common with him. He would always beat me in a running race. He would always show

me new music he thought I would like too. We would watch films on his big high definition TV and try

to spot mistakes and silly things like that. He could take something terrible and turn it in to something

comical. He was the greatest friend anyone could ask for!”

Start 2014 in style and snap up one of

our 13 places for this perfect ride!

Follow in the footsteps of our 2013

riders Peter Marsh, Amy McCallin and

Martin Billman who raised a whopping

£2636.99! The Prudential Ride London

100 follows a route made famous by

the world’s best cyclists at the London

2012 Olympics. Start in Queen Eliza-

beth Olympic Park, then follow a 100

mile route on closed roads through

the capital and into Surrey’s stunning

countryside, finishing at The Mall in

central London. This is a truly spectac-

ular event to be involved in. In the

next issue we will read about Peter

Marsh’s (right) experience of the ride.

Thank You...

Since our last newsletter in No-

vember our members and sup-

porters have been supporting

us through a variety of events.

An extra special thank you to:

Paul Robins and team who held

a Golf Day in Dubai raising a

huge £6,900.

Natalie for throwing herself out

of a plane in the name of charity.

Becky and colleagues for fund-

raising through a book sale and

office collection.

De Ruddick and the Ladies at

Workington Golf Club for rais-

ing £ 785.

Claire Erte for running the Car-

diff Half Marathon and raising

over £1000.

(Right) Ian Drury and team for

hosting their annual Brian Nor-

ris Charity Dinner.

If you are fundraising on our be-

half then please let us know so

we can assist and credit you for

supporting our vital work: fund-

raising@sclerodermasociety.co.uk

or call us on: 020 7000 1925

Scleroderma News: Fundraising Page 8

Fundraising Stars: Prudential Ride London 100

“I am close to finishing a

whole year without having a

shave or a haircut all in aid

of raising funds for the Scle-

roderma Society. My moth-

er Wendy was diagnosed

with the disease several

years ago and, along with

various other members of

my family and friends was

completely unaware that

such a condition existed, so

taking part in this fund rais-

er was also to raise aware-

ness. You may not know

mum personally but she is

the heart of our family, and

has us all round twice a

week to cook us a family

meal (usually about 12 of

us!!!) She would do anything

for anyone and always puts

others before herself.” Paul

plans to shave at a New

Year’s Eve party where fur-

ther money will be raised

via raffles and games. Please

help Paul to raise as much

as possible:

www.justgiving.com/

Paul-Le-Grave,

Hair Today, Gone Tomorrow

“Hi readers. My name is

Becky Pearson and I am a

Work Experience Officer at

Bradford Metropolitan Dis-

trict Council. I am also a

member of the Education,

Employment & Enterprise

Activity Hub.

In 2013, 4 col-

leagues and I formed an Ac-

tivity Hub for our overall

team. On a monthly basis

we get together to arrange

team activities and look at

ideas where we can raise

money for various charities.

We try to do a team build-

ing fundraiser every term.

Earlier this year our colleague

Janet Knowles and her family were

going through a terrible time with her

sister Dianne’s illness. Sadly Dianne

lost her life to Scleroderma. Janet’s

family arranged a number of fund rais-

ing events including The Three Peaks

Challenge and I asked Janet if there

was anything that we could do to help

raise some more funds for the charity

and if we could do our next fundraising

day in memory of Dianne.

We planned a date after the

summer school holidays and as it fell

around Halloween we decided to give

it a Halloween theme so we could

dress up. I contacted Susie at the Scle-

roderma Society to inform her that we

would be raising money and also to see

if she would be able to send me logos

for us to use for our poster that we

were designing. Susie was a great help

and it was lovely that she knew from

the basic information I had put in my

email who we were raising money for

and how the family had already raised

money doing the three peaks chal-

lenge. Susie arranged sending merchan-

dise for us to use to raise awareness

including pens, pin badges and wrist

bands which was so generous.

We asked for people to do-

nate cakes so we could sell them

across the 5 floors in our building.

Vicky, who is also a member of the

activity hub arranged for her partner

to put a Halloween Quiz together to

continue the theme. We had also ar-

ranged for the Book People to come

into our extension area at the end of

September to sell books and 10% of

the sales was donated to a charity of

our choice so on this occa-

sion it was the Scleroderma

Society.

October 25th ar-

rived and several of us came

in fancy dress. We had loads

of cakes donated by members

of our team and also Janet’s

family. At 10am, dressed at

witches, cats, wizards and

devils we tackled a couple of

floors between us selling

cakes, badges and wrist bands

and raising the awareness of

the charity. We even had an

18 month old witch selling

cakes with us! A few others

went round selling quiz sheets and

giving pens with these and the quiz

proved quite popular. We announced a

winner at 1pm with 18/20 and they

won a tin of chocolates that had been

kindly donated.

It was amazing when we start-

ed to count up the money people had

generously donated and we were so

shocked when we got the final figure

of £517.33 as this beats any amount

we have raised within our departments

in the past year. I think when people

are raising money for a charity that

touches someone’s heart and has af-

fected their family directly, people are

definitely more generous and it’s great

that we have been able to raise some

more awareness for the Scleroderma

Society.”

Celebrating Fundraising Success

Scleroderma News: Fundraising Page 9

If you would like to see your event covered in Scleroderma News, please email Hollie, hollie@sclerodermasociety.co.uk

Stamp Collecting Pulls in Pounds

Jason Burgh has once again taken on a challenge on behalf of

the Scleroderma Society, but this time it involves stamps.

Jason has been collecting stamps within his local community

and has gained huge support with his current total reaching

8,500 stamps. Jason’s collection has not only raised aware-

ness of scleroderma and the society but will bring in much

needed funds. Thank you Jason.

Going Dry for Scleroderma

We all like a nice glass of wine or something stronger on

a Friday but Chris Jones has gone dry this January. He is

getting sponsored to abstain from alcohol for the whole

month. Chris’s total has reached £250 but he has since

pledged that if he reaches £500 he won’t touch a single

drop in February either. Help to keep Chris dry: https://

www.justgiving.com/Chris-Jones91

Meet our Heroes:

Lianne Robertson and Jamie Forman “Jamie and I are taking on this challenge together and are really looking forward to it.

I’m an actor and events manager and Jamie works as a maintenance technician/Janitor in

a public school. We live in Glasgow and moved here together after meeting in our

hometown of Fraserburgh in the far north east of Scotland. I ran the London Marathon

in 2011 and since then Jamie has also taken a keen interest in running. I have always

told Jamie he must run the London Marathon at some point in life. Over the last few

years Jamie has done a few half marathons but this will be his first marathon. We chose

Scleroderma as we had a family member who suffered from an aggressive form and

unfortunately lost her battle with it. We hope that our funds can go towards more

research to find better treatments and even a cure.” Support Lianne and Jamie to reach

their target: uk.virginmoneygiving.com/LianneRobertson

The London Marathon 2014

Gareth Clifton “Since completing the London Marathon in 2011, I have secretly always wanted to do it

again and I was fortunate to be offered a place. I will be drawing on all my experiences of

previous marathons. This is a charity which is close to my heart especially as my mum suf-

fers from the condition. Having run for the charity previously and raised funds, I wanted to

do it again. I want to raise awareness and much needed donations to help the future treat-

ment.” Support Gareth on his London Marathon journey: www.justgiving.com/run-GC-run

Nicola Bowerman “I live in Bedfordshire with my husband Nick and my two children, Thomas, aged 8 and Sophie

aged 6. I never used to enjoy running. I think my dislike goes back to school P.E lessons where we

were made to run cross country in the freezing cold! However in 2012 I set myself a New Year’s

resolution to do something I struggled with and decided to take up running. I joined a local run-

ning club as I knew I would struggle to do this on my own and I have never looked back. I was

totally surprised to find out how much I absolutely love running and really wished I had started

running earlier. I was fortunate enough to gain a ballot place this year for the London Marathon

and I knew straight away I wanted to run in memory of my beloved dad (Bill Storey) for the Scle-

roderma Society. My dad was diagnosed in August 1998 with a very aggressive form of scleroder-

ma and was only given 3 months to live. Dame Black and Professor Denton gave my dad an op-

portunity to be part of a clinical trial and receive a stem cell transplant. His condition improved

and he was on top of his illness but unfortunately 7 years later he developed pulmonary hyper-

tension and died in December 2004. My dad was a wonderful man and I feel absolutely privileged

to call him my dad. He would be absolutely thrilled that I am raising money for the society and

giving something back for all the help and support they gave him and my family. As everyone

knows scleroderma is very rare, so I was completely shocked when one of my closest friends was

diagnosed with the disease last year. I am also running and raising funds for Katie Knight. I will

cross that finish line with the memory of my dad and celebrate with some bubbly with Katie!” If

you would like to sponsor me, my just giving website is www.justgiving.com/Nicola-Bowerman2

Scleroderma News: Fundraising Page 10

Scleroderma News: Fundraising Page 11

Fancy Getting Involved? Want to make a positive change in 2014? There are plenty of

ways you can help The Scleroderma Society:

Innovation Board The Innovation Board will discuss ideas

and ways in order to continue devel-

opment of the society. We will have

meetings both in person and via online

sources so even if you aren’t able to

travel please do get in touch if this

sounds like an opportunity you would

like to be a part of. You don’t have to

be a radical thinker to be on this

board. We are looking for individuals

who wish to see the society move for-

ward and progress and want to be a

part of that.

Newsletter Packing We are looking for volunteers who

can help us four times a year to pack-

age up our newsletters to be sent out

to our members. If you are able to

spare a day every three months or just

one day throughout the year then we

would love to have you on our team.

Live near London?

Love to make noise? Well this is perfect for you! We are

looking for volunteers to come down

and join us at the London Marathon on

13th April 2014 to cheer on our run-

ners! This year we have nine fundrais-

ers running and would love to give

them as much support as possible. If

you would like to support our fund-

raisers but don’t love to make noise

then we would love volunteers to hand

out goodie bags on our stall at the

finish line and raise awareness for the

society.

Refer a Friend for 2014 Included in this copy of Scleroderma

News is a ‘Join Us’ form. Why not pass

this form to a friend, and encourage

them to join the Scleroderma Society?

It’s only £5 a year and in return we’ll

send 4 copies of Scleroderma News!

Buddy/Befriender Would you like a scleroderma buddy?

Someone you can phone or have a cup

of tea with or even someone to help

you with your shopping. If you would

like to develop a friendship like this

then please get in touch so we can find

a buddy for you. Become a buddy! We

are always looking for individuals who

are happy to be added to our database

as a buddy. When another individual

seeks a buddy in your area we will get

in touch with you and support you in

your role.

If you are interested in any of our

volunteer opportunities please

contact Amy Baker: amybaker@

sclerodermasociety.co.uk or call

020 7000 1925 for a chat…

Fundraiser Stories Online: We

would love to feature all our fund-

raisers in our newsletter but un-

fortunately there just isn’t enough

space as we have so many won-

derful people fundraising for us.

So you can now read about our

fundraisers on our website under

Fundraiser Stories. Every time

you receive a newsletter from us

our Fundraiser Stories will be up-

dated so you can see our most

current fundraisers.

Could Your Employer

Help Fight Scleroderma?

Every year we are looking to increase awareness and raise

even more money to fund our vital work. Could your work help us this year? Nominate us for charity of the

year or hold a fundraiser within your work place to help raise awareness and funds. If you would like to know

more about how your workplace can support us email: fundraising@sclerodermasociety.co.uk

Hi readers! Hollie here! I’m recruiting researchers,

writers, bloggers, photographers, illustrators, graphic

designers and more to get involved in producing Scle-

roderma News! Experience or no experience, if you

have an interest in print media and would like to get

your work published please get in touch! I’d love to

hear from you! Email hollie@sclerodermasociety.co.uk

Top Tips: Help is at Hand!

Scleroderma News: Top Tips Page 12

Below: Hot tip ! These little purses make it easy to find your change

especially if your hands are not working properly! - Helena

Trustee Helena Rozga shares her top tips for coping with Raynaud’s!

Left: Helena’s red hot tip! Always carry hand warmers! The Hot

Rox is rechargeable, Helena got hers from Amazon:

www.amazon.co.uk/hotrox+hand+warmers , but you can also find

them elsewhere on the internet, including at www.the hotrox.co.uk.

If you have a Costco near you then they are the cheapest place to

pick up Little Hotties, costing around £11 for 40 pairs!

“Does limited hand functionality and

Raynaud’s make it difficult for you

to take your cards from your wallet

or purse? My hot tip is punch a

whole in the cards away from the

magnetic strip or chip/signature area

in one corner and put them on a

key ring! It’s easy for you to single

out the card you want and pass the

key fob to the sales assistant so they

can be scanned while still on the

ring! Sales assistants smile and tell

me it’s “very clever” of course they

don’t know it’s to stop the embar-

rassment of my fumbling around in

my wallet!” - Helena Rozga

“I recommend

pain manage-

ment, try read-

ing or Googling

“Spoon Theo-

ry.” Kim Tat-

terfield

“I find it helps to put a fleece blanket

in the dryer, rolling up in it will stop a

Raynauds attack immediately.” - Lin-

da Ferri

“I use Little Hotties Hand warmers

and toe warmers. I also wear ther-

mals under my clothes.” - Teresa

LeBleu Rowland

“I refuse to be

beaten by stairs,

and use this

'mountaineering'

session as my

way of creaking

the body back

into some sort

of action in the morning” - Sandra

Branch –Burbridge

“We are what we think! I change my

sad thoughts to happy thoughts and it

does make a difference in my attitude

and everybody around me. It is not

easy to do when our bodies are in

pain and suffering but if we can make

ourselves laugh, it does work mira-

cles on our attitudes.” - Ann Have-

lock

“Mittens not gloves, and always carry

the instant heat packs.” - Diane

Begley

“A warm fuzzy robe. If I keep my

core very warm, my hands and feet

don't have Raynaud's attacks as often

or as bad. Stocking hats help a lot

too. I may look silly but I am saving

my fingers and toes!” - Polly Lay

“For an inexpen-

sive quick fix, cut

the top bands off

old socks, cut a

small hole about

1/2 down from

the top (for the

thumb to go

through) and you can wear as a hand/

wrist warmer. You can hem or use

stitch glue to keep ends from raveling

depending on the material.” - Elie

Salas

“I try to walk on the treadmill at least

10 minutes a day, especially if the

weather is too cold to go out to

walk.” – Michele Huntington

“I have just bought a down duvet,

UGGs are a must, as are sheep skin

mittens, why not try an electric un-

der blanket too?” – Liz Fitzpatrick

Leadbetter

“I work out on

my ab-doer twist,

it gives me energy

and stamina. Mu-

sic also gets me

moving!” - Mar-

garet Cole

“I love my heat lamp in my bathroom.

I can get out of a warm shower and

stay warm, which helps me so much...

I make sure my clothes have been in

the dryer and start the day warm,

then it's easier for me to stay warm.

Hot hands and feet warmers. Mittens

work better than gloves for me... and

good boots!” - Krystal Hovater

“I have 3 mischievous male dogs that

keep me alert and force me to go

outside to see what they're up to. I

am the alpha to my pack, and when I

step outside they are 'pretend' biting

into the air at each other's faces. Be-

cause my hands hurt they know that

when I put on my leather garden

gloves, Mommy is going to play with

them!” - Maria Saenz Leija

“Do something

for other peo-

ple! I find if I set

a goal of doing

something for

someone else it

takes away from

the bad of Scle-

roderma and I

am able to then make it through a

day DOING instead of letting it keep

me down and out.” - Karen Cyrus

“I always make a list of things I need

to do (brain fog) and mark things in

their priority. Anything not urgent

can wait to be tackled on a good or

better day.” – Caroline Adams

Reader’s Top Tips for improving

your Scleroderma Life!

Scleroderma News: Reader’s Top Tips Page 13

DO YOU HAVE A TOP TIP YOU WOULD LIKE TO SHARE? Share your top tips with readers of

Scleroderma News and lets all help each other! Email: HOLLIE@SCLERODERMASOCIETY.CO.UK

LA Stone

My name is Georgia Davis and I have

been a fully qualified beauty therapist

since 1990.

It was during a placement in Switzerland

that I was shown and used LaStone Hot

& Cold stone massages. This highly effec-

tive way of massaging was so successful

with the skiers tired legs and bodies,

removing their lactic acid and preventing

the onset of muscle soreness.

I offer my clients a variety of

treatments, delivering a deeply

penetrating massage which ef-

fects chemical, physical and spir-

itual healing whilst bringing bal-

ance to mind, body and soul.

My first introduction to Sclero-

derma was though treating Hele-

na. After a full health assessment

I was able to tailor make a treat-

ment plan of varying tempera-

tures to enable Helena's body to

heal and re-energise itself with

out heavy or deep massage movements.

LaStone is a Geo-Thermal treatment,

where the circulatory system is stimulat-

ed by using hot and cold stones to enable

the body to do the work from the inside.

The hot Basalt stones are safely heated in

a controlled temperature unit whilst the

cold marble stones are placed on ice.

Learning about Scleroderma and the ef-

fects temperature can have on the body

especially if you’re also dealing with Ray-

naud's, I always keep the hands and feet

cocooned in warmth whilst using the

cold prescriptively on areas where there

is extra tension and stubborn aches and

pains. I also offer a alternative LaStone

treatment called CastleBuilding. Using

the stones to wrap up and cocoon the

body in an non- invasive therapy with the

client still fully clothed. This is excellent

for tension, stress and anxiety which is

often overlooked in today's world.

By Helena Rozga

“I have always tried to keep moving

throughout the various traumatic

stages of Scleroderma, ranging from

crawling up the stairs on all fours to

now doing Pilates and swimming. I

have always been determined not to

let Scleroderma get the better of me

and as you all know this is sometimes

really difficult. The things I have done

to maintain circulation and flexibility

have varied along with the degree of

involvement and pain.:

First off, I have always tried to mas-

sage my hands and feet. As soon as I

could tolerate body contact, I found

a lovely lady, Gill, at Bodykind, who

did the most wonderful aromathera-

py body massage and reflexology.

This was really beneficial along with

the wax baths and exercises for my

hands. I have progressed now to LA

stone massage, which eased my

aches and pains and helped to repair

my troublesome shoulder. I have

asked Georgia, my therapist to ex-

plain the LA stone technique to you.

Even when in hospital, I was able to

continue with the massage through

the wonderful Keith Hunt and team

of volunteers at the Royal Free.

When I was in Miami before my ill-

ness, I was in an hotel with a roof

top swimming pool. I thought it quite

bizarre to see people and particularly

ladies in full make up drinking cock-

tails in the pool and chatting. When

they were not drinking, they were

power striding up and down the

length of the pool. Obviously proper

swimming was uncool! I remembered

this years later and my second ven-

ture was to join a local pool. I just

walked up and down, hardly a power

walk but nonetheless the water was

supporting my movement and I was

able to exercise.

I had to deal with the Raynaud’s diffi-

culties but it worked for me. Eventu-

ally I was able to learn to swim again

which took time and discomfort as

my limbs were so constricted but I

am sure I am now in a much better

place because of it.

My posture and balance was affected

by the Scleroderma and friends kept

telling me to try Pilates but I was

afraid and embarrassed as I couldn’t

get down on the floor and my hands

do not flatten. I am sure you recog-

nise the difficulties here without me

writing about it. So my third venture

was to find Claire, a professional

Pilate’s teacher and amazingly I have

experienced all the benefits of Stott

Pilates, which I have asked Claire to

tell you about (on the next page.)

Friends tell me my posture is more

aligned and I am much more flexible.

Personally, if you give Pilates a go,

dependant on your level of stamina

and flexibility, it is better to start

with one to one tuition. Most places

do a free introductory session to

explain the basics and to see if it is

for you.”

Fixed or Flexible?

Scleroderma News: Reader’s Top Tips Page 14

Top Tips to Keep Moving: Pilates

Scleroderma News: Top Tips Page 15

By Clair Cornish, Manager of

Prime Pilates in Rayleigh, Essex.

“I was first introduced to Pilates after

I sustained a knee injury while train-

ing to become a professional dancer.

I was advised to undertake a course

of Pilates as part of a rehabilitation

programme, after undergoing knee

surgery which then allowed me to

complete my training and professional

dance career. After seeing such great

results through my own experience

and with my dance career coming to

an end I decided to train and become

a fully certified STOTT PILATES in-

structor.

I have worked with a diverse range of

clients and have helped them achieve

fantastic results: for example those

with injuries, postural problems, mul-

tiple sclerosis, pre and post natal cli-

ents and after meeting Helena, Scle-

roderma.

The STOTT PILATES method is a

contemporary approach to the origi-

nal exercise method pioneered by

the late Joseph Pilates. Co founders

Moira and Lindsay Merrithew, along

with a team of physical therapists,

sports medicine and fitness profes-

sionals have come together to refine

the STOTT PILATES method of exer-

cise, making it one of the safest and

effective method available. It is used

by rehab and prenatal clients, ath-

letes, celebrities and everyone in be-

tween.

Pilates is low impact exercise that is

designed to restore the neutral

curves of the spine and rebalance the

muscles around the joints. Exercises

can be modified to cater to many

different body types and abilities mak-

ing it applicable to everyday life.

The benefits of Pilates:

Increased strength without

unwanted bulk

Increased core strength, stabil-

ity and mobility

Improved posture and fitness

levels which may help prevent

injury

Greater ease of movement

Heightened body awareness

Low impact on the joints

Enhanced balance, coordina-

tion and circulation

Improved athletic perfor-

mance

If you are a beginner it may be best

to start off with a one to one session

and to always train with a qualified

instructor to ensure that you are

doing the movements correctly. An

experienced instructor will be able to

modify the exercises to accommo-

date your limitations, continually chal-

lenging your range and monitoring

your improvement.

People always ask what results they

should expect. Pilates will increase

your strength, flexibility, mobility,

balance and body awareness as well

as decreasing back pain and other

general aches and pains.

Stott Pilates can be done on both

equipment and on a mat. Most of the

- exercises are floor work, some-

times using small equipment such as

balls, fitness circles, roam rollers, flex

bands and pillows.

Pilates equipment is different. There

are several different pieces of equip-

ment that might be used in a lesson.

Some of the equipment uses spring

tension which doesn't always make

exercises harder as you would think

but actually helps you to isolate cer-

tain muscles.

Equipment found in a Pilates studio:

The reformer

Cadillac

Stability chair

Arc barrel

Spine corrector

Leader barrel

Regardless of age or fitness level, Pila-

tes is an ideal complement to any

cardiovascular exercise, athletic train-

ing or rehabilitation.

Scleroderma News: Scientific & Medical Page 16

DOC SPOT Chris Denton is a Professor in the Centre for Rheumatology at the Royal Free Hospital in London and

runs the Scleroderma Clinic. He also has a major research programme that spans both clinical and

laboratory trials related to scleroderma.

I have Raynaud's and scleroderma and

have been on the same medication

for some time. Recently, I have de-

veloped 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 medica-

tions given for scleroderma such as

methotrexate (and other agents). I

would recommend discussing this

with your doctor - you may need a

blood test. Sometimes mouth ul-

cers due to methotrexate can be re-

duced by taking folic acid supple-

ments. However mouth ulcers can

occur for other reasons or as part of

an underlying connective tissue dis-

ease.

My tongue swells up and goes blue at

times and I find it difficult to talk. It

feels like my tongue is shrinking. Can

Raynaud's affect the tongue?

It is certainly possible for the

tongue to be affected and this seems

to occur in both primary Raynaud’s

or in association with connective tis-

sue disease. Blood vessel spasm in

Raynaud’s can involve any of the ves-

sels that respond to or regulate tem-

perature and this includes the tongue

(it is an important cooling device in

dogs!) Raynaud's therapies may

improve these symptoms.

The tops of my hands are very itchy

and get tiny hard spots, which are not

visible but I can feel them, also the

tops of my feet, my big toe and

around my ankles are itchy too - no

spots but sometimes it looks like I

have a nettle rash on the top of my

toe and 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

uticaria and so if this is a severe and

persistent problem you should con-

sult your doctor as specialist derma-

tology or rheumatology referral might

be appropriate.

I have read that one should have an

ANA (anti nuclear antibody) blood

test if Raynaud’s becomes severe or if

you develop Raynaud’s after the age

of 40. If this comes back positive does

it always that you have scleroderma

or can you have positive ANA and

not develop scleroderma?

Most patients with Raynaud’s phe-

nomenon (RP) have “primary RP”

that is not associated with any under-

lying disease, some patients do devel-

op a related condition such as sclero-

derma or another rheumatic or con-

nective tissue disease (secondary RP)

some cases of RP have positive ANA

and this is associated with increased

chance of developing an associated

disease over subsequent years, but

many patients do not develop sclero-

derma. Research studies suggest only

about 10% of such cases progress to

scleroderma.

I have just undergone my first

course of Iloprost and wonder how

long it takes before it kicks in?

lloprost is a synthetic form of the

natural substance prostacyclin that

opens up blood vessels and improves

circulation. There may be some im-

mediate benefit from Iloprost during

infusion but the maximum effect

seems to occur around 6 weeks after

treatment is complete. This is likely

to reflect the beneficial effect on

blood vessels and their lining cells

(the endothelium).

I saw a Rheumatologist recently about

my possible Raynaud’s, dry eyes, and

dry mouth. I have difficulty in swal-

lowing. He has referred me to a Gas-

troenterologist and an ENT specialist

about my swallowing problems. He

has also suggested to my GP that he

should put me on drug called Thy-

moxamine for my peripheral circula-

tion. Is this a common medication for

Raynaud’s?

Thymoxamine is one of a number of

drugs that can reduce blood vessel

spasm. It was originally developed for

high blood pressure and is a class of

drugs called “alpha adrenergic block-

ers” that block some of the effects of

adrenaline. It is sometimes used in

Raynaud’s although other agents such

as Nifedipine or losartan are also pre-

scribed. It is often necessary to try

several different medications to find

one that works and does not cause

significant side –effects. Many of the

common side effects relate to lower-

ing of blood pressure.

This article has been produced in association with The Raynaud’s & Scleroderma Association.

Scleroderma News: Scientific & Medical Page 17

This is the story of Maurice Raynaud - the

man who put the ‘ R’ in CREST

As someone who has scleroderma, or

someone who knows a person with scle-

roderma, you’ll be aware that nearly all

those with systemic sclerosis can have

Raynaud’s. Sometimes the symptoms of

Raynaud’s can pre-date the diagnosis of

scleroderma by some years. When the

onset of Raynaud’s is swift and severe –

particularly but not exclusively in women

in their 30s or 40s – it is worth further

investigation by a rheumatologist. Where

it is found to be associated with an auto-

immune disease – particularly scleroder-

ma – the Raynaud’s is said to be

‘secondary’. Where no rheumatic auto-

immune disease is detected, it is generally

‘primary’ Raynaud’s – something which up

to 10 million people are estimated to have

in the UK alone.

Maurice Raynaud is said to have

‘discovered’ the medical condition that

bears his name, although the issue which

has and continues to face thousands of

people – affecting blood flow to the

body’s extremities – has existed through-

out history. Raynaud's is today called a

‘phenomenon’ rather than ‘disease’ as it

was in the 19th century and is named after

Dr Maurice Raynaud who documented

the symptoms for modern medicine. The

son of a university professor, August Ga-

briel Maurice Raynaud was born in 1834

and started his medical studies at the

University of Paris helped by his uncle,

Vernois, a well known Paris physician. He

obtained his medical doctorate in 1862

and a PhD in 1863 and although he held

privileges working in various Paris hospi-

tals, he was never appointed to a senior

position.

The story has it that in the late 1850s, the

presentation of a 27 year old woman

posed a conundrum to the medics of the

day. The fingers of her hands repeatedly

became pale and cold. Over the next few

weeks the tips of some of her fingers

became black and shriveled and these

‘cold’ episodes were accompanied by pain

and great discomfort.

The doctor who attended her was a

young man called Maurice Raynaud. He

was perplexed at the situation – faced with a patient who had spontaneously

developed gangrene of her fingers with no

apparent cause. The young woman ap-

peared healthy, with a good pulse in her

wrists that suggested a normal supply of

blood to her hands, yet her fingers looked

starved of blood and the tips of her fin-

gers had become gangrenous. Maurice

Raynaud’s 19th century medical teaching

told him that such gangrene was due to

either blockage of a main artery in a limb,

diabetes, typhoid, or poisoning by a fungus

associated with mouldy rye. None of

these were relevant to his patient and her

medical history showed that colour

changes in her digits seemed associated

only with cold temperatures and stress.

He deduced that the colour changes were

due to some sort of intermittent block-

age of the blood supply and that the

spontaneous gangrene of her fingertips

was in some way connected.

Over the next few years Raynaud saw

patients with similar symptoms and

shared his observations with colleagues.

Subsequently he recorded 25 patients whose fingers, toes, or sometimes the

face and ears changed colour in the cold

in a similar manner, whilst some also de-

veloped areas of gangrene on the affected

parts. Raynaud was baffled by the cause of

the phenomenon whose symptoms he’d

recorded which included colour changes

of the extremities and the appearance of

‘flat’ nails.

A breakthrough came when Raynaud

made a connection with the work his

contemporary, Claude Bernard, was un-

dertaking. Famous for his empirical ap-

proach to medicine, Bernard’s work in-

cluded experimentation on the body’s

blood flow. He had discovered that arter-

ies - the vessels carrying bright red blood

all around the body - are supplied by

nerves, which, when activated, cause the

arteries to constrict and hence carry less

blood. The nerves in question were called

the sympathetic nerves. Here at last was

Raynaud's answer! Raynaud believed that

these ‘sympathetic nerves’ must be over-

active, making the arteries so narrow that

not enough blood reached the extremities

to keep them alive. When the condition is

severe enough gangrene develops but in

its milder form the affected areas inter-

mittently turn white or blue and finally

red when the blood eventually returns. In

essence, the fingers and anywhere else

affected were being strangled or asphyxi-

ated by a lack of blood! Raynaud pub-

lished his thoughts in the form of a thesis

in 1862 called, "De I'asphyxie locale et de

la gangrene syrnetrique des extremites"

translated as "On Local Asphyxia and Symmetrical Gangrene of the Extremi-

ties".

Maurice Raynaud died at the age of only

47 in 1881 of a heart attack, having suf-

fered from cardiac disease in the preced-

ing years. He had become respected and

recognised as an excellent teacher, clini-

cian, researcher and writer.

When Raynaud discovered the condition

that would later carry his name, preven-

tion and treatment was little understood. However, the one recommendation that

is still relevant today is that patients

should try to stay warm and avoid con-

suming anything that might constrict their

blood vessels.

Today, so much more is now known

about Raynaud’s than in the 19th century –

it’s association with scleroderma and how

to manage moderate and severe cases.

Yet, awareness of its significance beyond ‘

that cold weather condition’ is still some-

thing the general population and some

clinicians need to consider seriously tak-

ing heed of the severity of symptoms and

investigating potential underlying causes.

Gloves On Please!

This February the Scleroderma Society

are getting their gloves on in support of

the RSA Raynaud’s awareness month

Scleroderma News: Scientific & Medical Page 18

By Frank van den Hoogen & Jaap

Fransen

Systemic sclerosis can be recognized

by an expert rather easily when the

disease is fully developed. But the

course of the disease can be different

between patients, and symptoms may

vary significantly especially in the be-

ginning of the disease. This makes it

sometimes difficult to establish a diag-

nosis of systemic sclerosis and it of-

ten depends on the expertise of the

physician.

The cause of systemic sclerosis is still

unknown, and there still is no therapy

that can cure the disease. Therefore

research is needed and to perform

research the participation of patients

is mandatory. In order to secure that

in studies of systemic sclerosis all

included patients indeed have system-

ic sclerosis, we need classification

criteria. Classification criteria are not

the same as diagnostic criteria, but

they should be very close to the way

physicians diagnose systemic sclerosis

in daily practice. To successfully apply

results from studies to patients in

practice, it is of course most relevant

that patients in studies resemble pa-

tients in practice.

In 1980, the American College of

Rheumatology developed criteria for

systemic sclerosis, the so called

“preliminary ACR-criteria for the

classification of systemic sclerosis”.

At that time, not much was known

about autoantibodies that are associ-

ated with systemic sclerosis, and we

did not know about the significance

of nailfold capillary changes. As a con-

sequence, autoantibodies and nailfold

capillary changes were not included in

the preliminary ACR-classification

criteria. Moreover, mostly patients

with definite and diffuse cutaneous

disease were included in the develop-

ment of these criteria.

Later, it appeared that

many patients with a

diagnosis of early or

limited cutaneous dis-

ease were not classified

as systemic sclerosis and

could not be included in

studies.

So it was time to devel-

op new classification

criteria. The European

League against Rheuma-

tism (EULAR) and the

American College of

Rheumatology (ACR)

assigned a task force

with the main goal to

develop new classification criteria for

systemic sclerosis that would per-

form better than the preliminary

ACR criteria. The task force consist-

ed of 4 Europeans (Frank van den

Hoogen, Jaap Fransen, Alan Tyndall,

Marco MatucciCerenic), and 4

Northern Americans (Janet Pope,

Dinesh Khanna, Sindhu Johnson, Mur-

ray Baron). The task force started in

2008. First we asked physicians who

treat many patients with systemic

sclerosis which symptoms or features

they thought could be attributed to

this disease. The results was an ex-

tensive list of 168 features, varying

form arthralgias and fatigue to thick-

ened skin, digital ulcers and autoanti-

bodies.

Next we started to reduce the num-

ber of features by having experts

rating their appropriateness for clas-

sifying systemic sclerosis. The fea-

tures and their combination was test-

ed with an expert panel. We exam-

ined in a specially collected database

with scleroderma patients and sclero-

derma-like patients what would hap-

pen if we omitted one feature and

how the features performed. All this

was done with the help of many scle-

roderma experts from Europe and

Northern America.

We finally succeeded to develop clas-

sification criteria that perform better

than the 1980 preliminary ACR crite-

ria. The new ACR-EULAR classifica-

tion criteria are shown in the table

(shown across page) as well as to

whom the classification criteria

should be applied and to whom they

should not be applied.

It is of importance to know, that pa-

tients who fulfill the classification

criteria almost always will have sys-

temic sclerosis, but that patients who

not fulfill these criteria still may have

systemic sclerosis. The main reason is

that not all symptoms ascribed to

systemic sclerosis, could be included

in the classification criteria. The ex-

pertise of the physician will remain

necessary in these cases to establish a

diagnosis.

READ MORE::

ACR: www.rheumatology.org

EULAR: www.eular.org

ACR-EULAR NEWS: Classification

Criteria for Systemic Sclerosis

By Mike Hughes,

Clinical Research Fellow,

University of Manchester and Salford

Royal NHS Foundation Trust.

The hand is truly an incredible me-

chanical and engineering wonder to

behold. Indeed, the intricacies of the

hand are what separate us from most

other animals and have allowed the

human race to make such incredible

achievements.

Patients with scleroderma often have

limitations in their hand function, for

example brushing their hair or open-

ing a jar, and this may have a signifi-

cant impact on quality of life. Hand

problems in patients with scleroder-

ma may be due to a number of causes

that I will now discuss.

Digital (finger and toe) ulcers are

common in patients with scleroder-

ma; indeed a recent study found that

10% of patients at any one time have

at least one finger ulcer. Digital ulcers

are found on the fingertips and also

over the back of the hands, are often

painful and not uncommonly become

infected. The end result is that such

ulcers can have a big impact on how

patients are able to use their hands.

Thinking about blood flow further (as

we believe that ulcers are largely

caused by lack of blood flow); severe

Raynaud's attacks, as readers may

well know, can be very painful and

disabling when they occur.

The skin thickening found in sclero-

derma may lead to another problem

with the hand: tightening with

'contractures' of the fingers, leading

to clawing of the fingers, and inability

to completely make a fist or stretch

out the fingers. Less commonly, we

increasingly recognise that a number

of patients with scleroderma also

have a type of 'inflammatory' arthritis,

that is, the joints themselves are actu-

ally inflamed or swollen, as opposed

to wear and tear ar thr i t i s

(osteoarthritis). It is important to

recognise the difference, as there are

effective treatments for such a type of

arthritis.

Calcinosis (lumps of calcium-

containing deposits beneath the skin)

represent yet another possible hand

problem in patients with scleroderma:

they can be very painful, and can in-

terfere with hand function. Some-

times calcinotic lumps ulcerate

through skin and there is then a dan-

ger that the area becomes infected.

I cannot emphasise enough how im-

portant it is that patients with sclero-

derma are managed by a dedicated

'multi-disciplinary team', that is a

group of health care professionals

(doctors, specialist nurses, occupa-

tional therapists, physiotherapists and

podiatrists to name but a few!) who

are familiar with the specific issues

relating to scleroderma. As the old

saying goes, “if in doubt it is always

best to get things checked out". For

example, if you are concerned that a

digital ulcer may be infected, then you

should seek medical advice as soon as

possible.

It is a great source of encouragement

that different researchers around the

world are looking at different aspects

of hands problems with patients with

scleroderma, such as digital ulcers and

also contractures of the fingers.

Scleroderma News: Scientific & Medical Page 19

Item Sub-items Weight/score

Skin thickening of the fingers of both hands extending proximal to MCP joints(sufficient criterion)

- 9

Skin thickening of the fingers(only count the higher score)

Puffy fingers 2

Sclerodactyly of the fingers (distal to the MCP joints, proximal to the PIP joints

4

Fingertip lesions (only count the higher score)

Digital tip ulcer 2

Fingertip pitting scar 3

Telangiectasia - 2

Abnormal nailfold capillaries - 2

Pulmonary arterial hypertension and/or interstitial lungdisease

- 2

Raynaud’s phenomenon - 3

SSc-related auto-antibodies(anticentromere, anti-topoisomerase I, anti-RNA polymerase III)

- 3

Add to maximum weight in each category to calculate the total scorePatients having a total score of 9 or more are being classified as having definitive systemic sclerosis

ACR ACR -- EULAR SSc classification criteriaEULAR SSc classification criteria

Hand Problems in Patients with Scleroderma

Scleroderma News: Scientific & Medical Page 20

Telangiectatases are knot-like clusters

of blood vessels on the skin which

can occur in 30 to 50 per cent of

patients with systemic sclerosis, a

potentially serious and incurable au-

to-immune condition that affects con-

nective tissue. Telangiectases tend to

occur on the face, neck and upper

limbs and can cause psychological

issues for patients.

Currently, doctors use laser treat-

ment to blast the Telangiectases and

destroy them but this treatment can

be painful at the time and result in

bruising afterwards so researchers

have been looking for an alternative.

Salford Royal is one of only a handful

of Trusts in the UK specialising in

systemic sclerosis, also known as

scleroderma, and Consultant Rheu-

matologist Ariane Herrick, also Pro-

fessor of Rheumatology at The Uni-

versity of Manchester, is a leading UK

expert in the condition. As part of

the Trust’s and University’s wide

range of studies to improve care of

scleroderma patients, researchers

tested using intense pulsed light (IPL)

instead of laser treatment. IPL is often

used cosmetically for treating birth-

marks and for hair removal.

Their pilot study treated 19 patients

with Telangiectases, using IPL on one

side of the face and laser treatment

on the other. They had three treat-

ments over the course of eight weeks

before the results were analysed us-

ing close-up photographs and special-

ist imaging. The research showed that

the effects were roughly comparable

but IPL had fewer side effects.

Salford Royal Rheumatology re-

searcher Dr Graham Dinsdale, who is

also a Research Associate at The Uni-

versity of Manchester, said: “While

this was only a small-scale pilot study,

it does suggest the potential for an

alternative, less painful, treatment for

Telangiectases. We will continue to

do all we can to find new and better

treatments for patients with systemic

sclerosis, which is a very serious and

debilitating condition.”

What is Telangiectasia?

Denise, a blogger from Michigan USA, explains: “Telangiectasia (Pictured above) are capil-

laries that have became dilated or enlarged which makes them visible on the surface of

the skin. Their appearance can vary from large pronounced red dots to very small dots.

More of a spidery broken vessel look may be what some experience. The specific reason

this happens is not yet known but scleroderma specialists view this as another aspect of

vascular damage caused by scleroderma. The spots when pressed will disappear only to

reappear once the pressure is released. They are flat and smooth on the skin with no

evidence of a raised spot or rash. Telangiectasia is the T in the acronym of CREST Syn-

drome. However, people with diffuse scleroderma can also get Telangiectasia. Telangiecta-

sia spots seem to more commonly appear on areas of the body which are exposed to the

sun. Therefore it has been stated by physicians that using a sunscreen of SPF 15 or great-

er is typically recommended. There are no proven preventative measure and efforts to

remove the spots by laser are not always successful. Many people choose cover-up cos-

metics such as a concealer or a foundation make-up as an alternative to the costly proce-

dure of laser which doesn't appear to bring long-term results.”

Read more of Denise’s blog: : http://sclerodermasupport.blogspot.co.uk

Researchers See the Light

Researchers at Salford Royal NHS Foundation Trust have

tested a new way to treat a disfiguring skin condition.

Scleroderma News: Scientific & Medical Page 21

By Lisa Elam

Patients with Scleroderma are part of

a minority of patients considered to

suffer with a ‘rare’ disease. Although

only a relatively small number of peo-

ple are affected by the disease

(approximately 1 in 10,000 people in

the UK) it is a disease that affects

multiple systems in the body and has

life-changing consequences for those

who are affected.

In my capacity as a medical student, I

was afforded the privilege of meeting

many patients with Scleroderma who

were lucky enough receive world

class treatment at my Rheumatology

p lacement with Professor K

Chakravarty, in May 2013. I was im-

pressed by the high standard of care

and was pleased indeed to see that

even patients with such a rare condi-

tion were being given the opportunity

to be seen and treated in their local

hospital, as opposed to travelling far

afield to other specialist centres.

This experience inspired me to sub-

mit an abstract to the International

Workshop for Scleroderma Research

in Boston, Masachussetts, in the

hope of broadcasting this excellent

work in the hope that the importance

of patients with rare conditions re-

ceiving specialist care in their local

area would be recognised by clinicians

globally. In order to quantify the ef-

fects of having such specialist care

provided locally, I conducted a survey

of all of the scleroderma patients

seen by Professor Chakravarty at

Queen’s hospital, Romford.

The results showed that 98% of pa-

tients 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 conven-

ience perspective. 97% of patients felt

that their disease was well controlled

due to their attendance at the special-

ist clinic.

The poster was very well received at

the Scleroderma Workshop and

many clinicians and scientists alike

were interested to see how this mod-

el of care could be replicated on a

wider scale. The poster (pictured

above) 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.

I would like to thank the Scleroderma

Society for sponsoring my attendance

at the International Workshop for

Scleroderma Research and look for-

ward to working with them in the

future in order to raise awareness

amongst healthcare professionals

about Scleroderma.

Super-Specialist Clinics For All:

Introducing an exemplary model of care from North East London

Specialist Clinics

at the Royal Free

Hospital, London:

The rheumatology department is a major

centre for rheumatology y and connective

tissue diseases providing high quality care

for the full range of rheumatic diseases

including spinal pain through a physio-

therapy-led service. In addition to provid-

ing secondary care for rheumatic disease

to the local population, we have particu-

lar expertise in multisystem connective

tissue diseases, especially scleroderma

(systemic sclerosis).

Location: Lower ground floor, Royal Free

Hospital, London NW3 2QG

Appointments can be made following a

referral from a GP, and may be made

through the choose and book system, or

as tertiary referrals from other hospitals.

Cathy Can Help! Fight Scleroderma the fashionable way

Cathy Renwood, 44, from London,

has had Linear Morphea since the age

of 10. When she was 20 she had to

have major surgery after she lost all

movement in her right arm, due to

Morphea tightening her chest wall.

Cathy had her chest wall and right

breast rebuilt using skin grafts. After

the ordeal Cathy was left with scar-

ring and was forced to learn how to

dress around this. Cathy said: “Luckily

I am someone who loves shopping,

but this was still sometimes a chal-

lenge!

“Because of this I have recently start-

ed a Personal Shopping Business. I

specialise in Post-Mastectomy Fashion

and dressing around scars. I truly

believe that everyone should look and

feel their best. Some of us have a bit

more to dress around but this is al-

ways possible.”

“I am based in London and would like

to offer anyone with Scleroderma

20% off any of my services.

Also if anyone in the London area is

hosting/having a charity event, I would

like to donate a half day Personal

Shopping Session.”

For more information on Cathy’s

work, take a look at her website

www.thestyleangel.co.uk.

Break Time Can you find all the Sclero-words?

Can You Solve

the Riddle?

A father and his son are in a car acci-

dent. The father dies instantly, and the

son is taken to the nearest hospital.

The doctor comes in and exclaims "I

can't operate on this boy."

"Why not?" the nurse asks.

"Because he's my son," the doctor

responds.

How is this possible?

Scleroderma News: Pharmacy Page 22

M E H O R E X A T E T T

O A S A M G O K S S R N

R H N M Y A H P I E U T

P F L D I L A X O A A R

H I S Y L I S N L G L O

E Z K T F Q P I S Y E O

A E R A R E I P P N D C

C H I S E N T O N L R D

T E Y I E N A M I N U L

D I R O P S L T U I G U

Notice board Local Contacts and support services

Inspirational Quote of the Season “I learned that courage was not the absence of fear, but the triumph over it. The brave man

is not he who does not feel afraid, but he who conquers that fear.” ― Nelson Mandela

Bedfordshire

Rita Boulton

ritaboulton@gmail.com

01767 312544

Buckinghamshire &

Hertfordshire

Marilyn York

andrewandmarilyn@bt

internet.com 07702 592 387

Burton on Trent

Helen Nutland

helen10burton@yahoo.co.uk 01283 566333 x5247

Cornwall

Alex Pooley

alex@sclerodermasociety.

co.uk 01736 755845

Derbyshire, S.Yorkshire,

Staffordshire & Cheshire

Lynette Peters

lynette@sclerodermasociety.

co.uk 07947 350815

Derbyshire, S.Yorkshire,

Staffordshire & Cheshire

Diana Twigg

diana@sclerodermasociety.

co.uk 01298 24539

Devon

Anne Sheere

anne@sheere14.orangehome

.co.uk 01752 338156

East Anglia

Jacky March

jacky@sclerodermasociety

.co.uk 01394 286637

East Midlands

Cheryl Darch

cheryl@sclerodermasociety

.co.uk 0116 2717180

East Sussex

Rosanna Clifton

rosanna@sclerodermasociety

.co.uk 01424 426738

East Yorkshire

Lynn Hind

lynn.hind@hotmail.co.uk

01482 354312

Essex, Kent & East London

Amanda Thorpe

dollydumpling23@gmail.com

01702 344925

Hampshire

Tracey James

tracey.james93@ntlworld.com

02392 677476

Lancashire & North West

Yorkshire

Sheila Procter

sheila@sclerodermasociety.

co.uk 01282 429004

Merseyside

Helen Lingwood

jonandhel@sky.com

0151 2801194

North East England

Jessie Pickering

01388 527840

North East Scotland

Susan Wilson

wilsonsusan1@sky.com

077 40185627

North Wales

Kate Owen

angharad.owen48@btinternet.

com 01492 515834

Oxfordshire & Berkshire

Melanie Bowen

melanie@sclerodermasociety

.co.uk 01865 517033

Powys & Shropshire

Jennifer Ames

ames60@talktalk.net

01544 267988

Scotland

Frances Bain

iainandfrancesbain@msn.com

0131 477 1122

South London

Celia Bhinda

mcbhinda@btinternet.com

020 8698 6294

South Wales

Belinda Thompson

belinda@sclerodermasociety

.co.uk 02920 625056

South West England

Judith Foster

judithlfoster@gmail.com

07985 335 336

Surrey

Nicky O'Shea

nicky.oshea@live.co.uk

01483 764524

West Midlands

Jane Beach

jane.beach@blueyonder.co.uk

01527 459552

West Sussex

Lesley Dodd

lesleydodd@hotmail.co.uk

01903 753971

West Sussex

Jo Frowde

jo@sclerodermasociety.co.uk

01403 741445

Wiltshire & North Hampshire

Lynn Morton

lynnm@sclerodermasociety

.co.uk 01980 863444

Local Group Co-ordinator: Liz Holloway

liz@sclerodermasociety.co.uk, 01243 539466

Join us on Facebook!

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Health Unlocked. If you

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look around, meet and

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people with Scleroder-

ma.

Scleroderma News: Local Groups Page 23

Contacts

Steve Holloway

(Secretary) steve@

sclerodermasociety.co.uk

Susie Hoare susie@

sclerodermasociety.co.uk

Helena Rozga Helena@

sclerodermasociety.co.uk

Office & Administration

Manager: Amy Barrick

020 7000 1925, amy@

sclerodermasociety.co.uk

Local Group co-

ordinator: Liz Holloway,

liz@sclerodermasociety.co.

uk

Helpline Manager: Helena

Rozga, Helena@

sclerodermasociety.co.uk

Event enquiries: Susie

Hoare, susie@

sclerodermasociety.co.uk

Events Calendar Calendar

@sclerodermasociety.co.uk

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.

Carers Support Group:

Michael Thorpe 01702 344

925, MTDAAC@live.co.uk

Specialist Nurses:

Nurse led lines for general

inquiries only, in non emer-

gencies. If the nurse is una-

vailable please leave a mes-

sage:

Liverpool Aintree Univer-

sity Hospital: Jan Lamb

0151 525 5980 bleep 2231

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

633 957

Leeds Chapel Allerton

Hospital: Elizabeth Tyas

0113 392 3035

London Royal Free

Hospital Scleroderma

queries: 020 783 02326

and Pulmonary

hypertension:

020 7472 6354

London Royal Brompton

Hospital Respiratory

queries: Lucy Pigram

07758 8943175

Manchester Hope

Hospita: Liz Wragg and

Catherine Lambe 0161

206 0192

Newcastle Freeman

Hospital Scleroderma

queries: Karen Walker

0191 223 1503 and

Pulmonary hypertension:

Rachael Crackett /

Julia De Soyza

0191 213 7418

Portsmouth Queen

Alexandra Hospital:

Paula White / Julie Ingold

02392 286935

Scleroderma News: Contacts Page 24

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

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The Scleroderma Society is a registered charity: 286736