april newsletter 2014

News May Issue 2014

In this issue:

You look Fabulous! Promoting a Positive

Body Image Scientific & Medical News

News From The Third World Congress

Putting a spring in your step

Scleroderma

Stene Prize Winner 2014

Turn towards the sun:

Prepare for World

Scleroderma Day

7

The Scleroderma Society is a registered charity: 286736

Hello everyone, and welcome to this Spring issue of

Scleroderma News. The birds are singing, the trees

are laced in beautiful shades of pink, and the sun that

we’ve missed so badly is beginning to show its divine face. Yay!

Spring brings with it an exciting new chapter in my life, as I am set to achieve

QTLS (Qualified Teacher Status) this May. Although I have been teaching for the

past three years, making it official with the achievement of my (third) degree is a

monumental achievement for me. My journey has not been easy, alongside all the

usual teaching related issues, I have had to battle to overcome health problems in

equal measure. Though it has tried, Scleroderma has not beaten me, nor stopped

me from attaining this goal. With this, my message for all of you out there, is:

Fight back, reach for the stars, and don’t let Scleroderma get in your way!

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:

[email protected]

Scleroderma News: Welcome

Welcome! Spring has sprung!

Hello, and welcome to the second issue of Scleroderma News 2014!

Editor’s Note:

I am writing this piece for our newsletter on April 14th.

There is nothing particularly significant for me about this

date except that it is a glorious day and I am sitting in my

garden. The sky is blue and I have turned my chair towards

the sun.

As I reflect on what I have just said I am reminded that

“turning towards the sun” is the theme for our World Scle-

roderma Awareness day. Amy Baker will tell you more

about our plans this year and how you can get involved later

on in this newsletter.

While I am looking at the sun and I reflect on the Scleroder-

ma Society, I am extremely proud and thankful for all of our

supporters. Whether it is you just saying “hello” or that you

“like” us or “follow” us on our social media sites, or you are

involved as a volunteer or fundraiser, it is fantastic to know

that our “community” is growing and increasing in strength

and energy.

I am also thankful for our small team of staff, Amy Baker

(who works full time and looks after volunteers and fund-

raising), Chloe Kastoryano (who works Mondays and Tues-

days dealing with research awards, leaflets, health profes-

sionals liaison, conference planning and other projects), Amy

Barrick (who works part time Tuesdays to Thursdays and

takes care of the office including memberships, finance and

other administration). They are full of brilliant ideas on how

to improve the way we do things and have a sharp focus on

excellence of service and efficiency, so a good team.

As we leave the wet and grey winter behind, I am also

thankful for the seasons, particularly spring and summer,

when brighter colours paint our landscapes and we feel

more motivated. So let us all join in and have some fun for

Scleroderma Awareness weekend 27th to 29th June and “Be

Bright! Be Blue!” for the Scleroderma Society.

I look forward to seeing you all at our AGM and conference

on July 19th.

Best Wishes

Helena

Society News The Latest News - Spring 2014

A Local Group Meeting is

Proposed: Wales / Cardiff

Belinda Thomson is hoping to set a

date for a get together, possibly the

middle of September if anyone is in-

terested in arranging this, please can

they email her directly at the follow-

ing email address: belinda@scleroder

masociety.co.uk.

She says: “At the moment I am think-

ing of around September 18th so

hopefully all holidays will be done and

children and grandchildren will be

back at school.”

Group News From Lancashire

Above is a lovely photo sent in by Sheila Procter of ‘the Lancashire Lasses.’ The girl’s last meeting took place at Sycamore

farm in Burnley. Their next meeting is on Monday 19th May, at 12pm and will also be at held at Sycamore Farm.

For more information contact Sheila using the details featured on our Notice Board page.

West Midlands Group News:

The West Midlands support group held

its first face to face meeting on Thursday

27th March in Birmingham. We enjoyed

a drink whilst sharing experiences of

living with Scleroderma and many good

tips were passed on!

Jane Beach said: “We were absolutely

delighted to be joined by Liz and Steve

from the society and to hear more about

their important work.”

A further West Midlands get together

has been booked for 12th June at 1pm in

Cafe Zest on the second floor of House

of Fraser Birmingham.

All welcome!

Scleroderma News: News

The Challenge of Disfigurement:

Changing Faces – Who we are and what we do By Deborah Mechaneck,

Regional Officer, East and South East

Over one million people in the UK have conditions, scarring or marks that affect the ap-

pearance of their face or body. Other people’s reactions to their appearance can make

their experience very difficult. They often face staring, intrusive questions, teasing, prejudice

and discrimination. Everyday situations like walking down the street, making friends, using

public transport and applying for jobs can be daunting and overwhelming.

“It wasn’t being in hospital that scared me most.

It was walking down the street afterwards. People

stared at me, called me names or crossed over to avoid

me. I could tell they were embarrassed but their reac-

tions really upset me. I felt so lonely and it was easier

not to go out.”

- Quote from a Changing Faces supporter

One of the most difficult problems someone with a disfig-

urement has to face is the assumptions people make about

them. Three common assumptions that people make are:

1. People with an unusual appearance lead second rate

lives – good looks are believed to be the key to suc-

cess;

2. People with disfigurements are ‘different’, ‘abnormal’

or as in horror films even ‘scary’ or ‘nasty’;

3. People can, and should, get their condition ‘fixed’ by

a surgeon.

Such thinking and assumptions can have a negative impact

on people’s lives and lead to prejudice and discrimination.

Changing Faces is the UK’s leading charity supporting and

representing people with disfigurement and enabling every-

one, whether directly affected or not, to face disfigurement

with confidence. The charity’s work involves: Providing in-

formation, advice and support, to individuals, parents and

teachers, both practical and emotional directly through our

Changing Faces Practitioners or through a wide range of

self-help resources. Offering staff training and consultancy

for professionals and policy-makers to help create fair and

inclusive environments. Campaigning for social change

through promoting a society in which people are treated

fairly and equally. Providing a Skin Camouflage Service, an

important addition to the care that we provide.

What is the Skin Camouflage Service and how does it work?

For someone living with scarring or a skin condition that

affects their appearance and confidence, specialist camou-

flage products offer a way to cope. The service helps indi-

viduals to regain self-confidence and independence. Chang-

ing Faces’ regional officer Deborah Mechaneck, explains

how the service works. “Our trained practitioners select

the best colour match for each person’s skin tone. They

then teach clients how to apply the camouflage creams to

improve the appearance of the affected areas. These creams

can provide effective waterproof cover for a wide number

of skin conditions including birthmarks, psoriasis,

vitiligo and those that cause scarring.”

Scleroderma News: Positive Body Image Special


There is no charge for the consultation. However, Chang-

ing Faces is a charity and the Skin Camouflage Service

relies on donations from the public. Deborah says: “It

costs us around £50 to provide each consultation so do-

nations are always welcome to help us continue this and

other services.” The service is available to anyone who

would like to learn how to camouflage a scar or skin con-

dition and is suitable for men, women and children of all

ages and ethnicities.

Deborah adds: “After the initial consultation, clients are

given an advice leaflet to take away with them to remind

them of how the process works. It includes information

about how to use a moisturiser, barrier cream, sunscreen

or medical preparation, prior to applying camouflage cov-

er, which may be relevant to people with scleroderma.”

The Skin Camouflage Service helps over 5,000 people

every year. Deborah has sat through over 30 Skin Cam-

ouflage consultations herself and has seen first-hand the

difference it makes to people’s lives. Some of the follow-

ing quotes demonstrate how beneficial the service is:

“I don’t use skin camouflage every day, but when I’m meeting

someone for the first time it stops vitiligo being a distraction”

“I know the scarring won’t go away but now I can just be my-

self again”

“When I look in the mirror without it, all I see is redness. As

soon as the make-up’s on, I feel so confident and can just get

on with my life” – service user with rosacea

“My volunteer was absolutely lovely, a pleasure to be around.

Very helpful and patient and showed me great products and

how to use them”

“When Changing Faces came to the Society AGM & confer-

ence last year, their stand looked very interesting & I strolled

over for a closer look. Along with hundreds of others, I'm sure,

I have long hated my reduced, furrowed lips, and avoided lip-

stick for years. I was persuaded, however, to give it a try and

ended up choosing quite a dark

red lip liner just to see what it

would look like; expecting to re-

move it immediately! It was cer-

tainly rather dark , but applied

outside the lip edges and filled in,

I suddenly had lips again and the

general feedback was positive. I

have used a quieter colour since.

It takes a bit of time and care,

but is well worth the effort.” - Liz

Holloway

For more information visit:

www.changingfaces.org.uk

One of the most popu-

lar reasons to have per-

manent make up today

would be to eliminate

the daily chore of apply-

ing your usual brow, eye

or lip make up. Fair,

sparse, or uneven eye-

brows can be totally

transformed into beauti-

fully natural and perfect-

ly defined brows, eyes

can be made to look

bigger, brighter and nat-

urally made up and lips

can be perfected with a

lovely hue of colour,

making them look natu-

rally more even and

fuller if desired.

Permanent make up is the art of applying coloured pigments

into the upper layer of the dermis (skin) to enhance your

appearance. Promoted by doctors and beauty journalists

this treatment is a hygienic and safe beauty essential for

those wanting to look their best.

Joanna Twyman has been specialising in the art of perma-

nent make up since 2001.

With a vast array of colours available Joanna uses her expe-

rience and knowledge to custom blend the pigments to

each individual skin tone. The pigments used are non reac-

tive, fragrance free with no emollients added. The results of

the treatment can be a subtle or dramatic as you wish.

For some people this is a total

vanity treat but permanent

make up isn't always about van-

ity alone, for others it enhances

confidence and femininity, espe-

cially when an individual has

been affected by cancer, ill

health or alopecia.

If you would like anymore

Information contact Joanna on

01702 230356 / 07733334665,

www.joannatwyman.co.uk.

The Beauty of

Permanent Make Up

By Joanna Twyman

‘Who are you?’

‘Where did Lynn go?’

These questions consumed me every

time I looked in the mirror after being

diagnosed with Diffuse Scleroderma.

How did I initially cope psychological-

ly and emotionally, having to face the

world as my facial features started to

dramatically change as I morphed into

what is medically known as Mauskopf

(mousehead?) These changes included

thin, pursed lips, a pinched nose and

thick shiny taut skin. My eyelashes and

eyebrows became sparser by the day,

my hair thinned and, to top it all, my

hands and fingers started to curl.

Living with Diffuse Scleroderma in a world where people

are appearance conscious is not easy. However, in this day

and age I am lucky that there are beauty aids readily availa-

ble, such as hair extensions, which help to lift my self-

confidence when I step out.

My personal approach to Diffuse Scleroderma might help

someone who is also diagnosed with it.

Look for a positive. I have no wrinkles

due to the overproduction of collagen.

Always put in the extra time and effort

to look your best without compromis-

ing your health. For example I wear

layered under garments to keep warm

and I never leave my house without

applying makeup, even if it's just draw-

ing in my eyebrows and adding a slick

of blusher. Make up can make a big

difference.

Dress up for special occasions. Despite

needing assistance sometimes, due to

restrictions with flexibility and curled

fingers, I will still make a point of wear-

ing a glamorous outfit, accessorized

with jewellery and get my hair done.

Take the opportunity to use procedures that will improve

your looks. I had laser treatment to my face to help control

the Telangiectasia (red spider veins). I also had some fat

cells transferred to my face, which has given more mobility

to my face and minimized my mask-like appearance.

Don’t hide, no one is perfect. NEVER GIVE UP!


Fight Scleroderma the ‘Lynn’ Way

Inspirational Lynn shares her top beauty tips

Celebrating Easter

...Because it’s not all

about chocolate! Many of our members have been organising fundraisers this Easter, just like Debbie Jardine, who organised an Easter coffee morning to raise funds in memory of Robert Barrow.

Debbie organised a range of activities to raise as much mon-ey as possible for the society, with a raffle, cake sale and Easter egg decoration competition. Debbie said “the kind generosity of our customers once again made our Easter Coffee Morning a great success. All monies collected this year were in memory of Bob Barrow a customer and close family friend. A fun time was had by all the children and adults alike”. The Easter coffee morning raised a fantastic £300 for the society.

If you would like to organise an event just like Debbie then get in touch with Amy today:

[email protected]

mailto:[email protected]

Scleroderma News: Fundraising

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!

In loving memory of Dave Willis

London 2 Brighton Challenge

By Noreen Walsh, who will be 52 in a couple of weeks

when she completes the challenge…

“London 2Brighton is an extreme challenge that you can

run, jog or walk. It covers 100km, 62 miles in real money,

and you are given 30 hours to complete. I have done the

challenge twice before for another charity and raised a lot

of money. I think that to raise money you need to do

something that people feel is a bit strange or something

they would not do themselves. I run a10K for charity and

get nowhere near the same response as this challenge. It

is not only a physical challenge but a mental one! By the

time you complete half of your challenge you are physical-

ly and mentally exhausted but the camaraderie keeps you

going. It is so well organised you feel safe all the way.

My friend Dave Willis died of complications related to

scleroderma and his anniversary will be in May this year.

What a better way to pay tribute to the struggle that

those with this cruel disease face than to push yourself to

the limit! I am not going to tell anyone that it is easy! If

you can walk you can complete this challenge. (Blisters

never killed anyone).

I have completed this challenge before in 27hrs but

hope to go a bit quicker this year. However speed is not

the issue! I am not 18 any more and am not doing it to set

any records. I want to do it to raise money for the sclero-

derma society in memory of Dave.”

Support Noreen today: http://uk.virginmoneygiving.com/

NoreenWalsh.

Our Star, Daniel Thomson Daniel lost his Grandma; Dianne Roe-

buck to Scleroderma on 13th February

2013 aged 69.

Joanne Thomson (Daniel’s Mum) said:

“Daniel did not want the anniversary

to be a sad day and wanted to do

something funny to raise money and

make us all smile. He asked me if he

could shave his head and raise money

for Scleroderma. For a self-conscious

12-year-old boy, I thought this was a

very brave and wonderful thing to do,

so said yes straight away.

We approached his school to

ask for support and they

agreed they would let him do

this at school and encourage the chil-

dren to support and sponsor him.

Daniel has not only raised £430 with

money still coming in, he has also done

a fantastic job in raising awareness of

the condition. The local newspaper is

featuring his story and his friends at

school posted pictures on Facebook

explaining what he has done, some of

which have had over 1000 likes.”

Spring’s Fundraising Stars

What is a dry athlete?

A Dry athlete is basically someone

who gives up alcohol for a period of

time! In my case, 2 months. I was on

average drinking around 25 pints of

beer a week and the longest period of

time I experienced without

alcohol before was a week. I am

particularly proud to achieve 2

months.

Why did you choose this fund-

raiser to support the Sclero-

d e r m a S o c i e t y ?

I chose the Scleroderma Socie-

ty because Scleroderma and

Raynaud’s are currently affect-

ing my partner’s mum. I was deter-

mined to raise money for this cause

because she continues to battle on and

keep smiling and is a fantastic inspira-

tion for us all. I had an incentive to

lose weight as well (currently 2 stone

lost) and thought the idea of doing a

dryathlon for a cause particularly close

to my heart would be a good idea! The

whole experience has changed my life.

How much money did you raise?

In total, I raised £800. My initial target

was £250 but I raised 3 times more!

What would you

say to others

considering fund-

raising for the

Society?

I would definitely

encourage peo-

ple to consider

fundraising for a

fantastic charity. I received a letter and

certificate thanking me for my efforts

and the official Facebook page con-

stantly promoted my just giving page in

order to raise as much as possible.

Thank You...

Company Giving

Thank you to David Grieve for nomi-

nating us to be included in his compa-

ny Lands’ End’s Giving and Sharing

Scheme that raised £246.00 for the

society.

If your company has a giving

scheme please consider nominat-

ing the Scleroderma Society.


Interview with Dryathlon

Champion Chris Jones

Waitrose fundraising Success Story... On the 9th April we were invited to Waitrose in Newport to hold an awareness and fundraising event. This event was held in memory

of Victoria Garratt, the former Branch Manager, who passed away a year ago, aged 33 from complications relating to scleroderma.

Waitrose were wonderful on the day

and their generosity showed how

much Victoria meant to them. Wait-

rose supplied us with three wonderful

hampers to be raffled and our volun-

teers brought plants and books to

sell. We had a range of informative

literature about scleroderma.

It was a really successful day, as we

had a constant stream of customers

wanting plants, books, raffle tickets or

just to donate to us. All the volun-

teers were great, speaking about why

we were holding the event and ex-

plaining scleroderma and how the

disease affects them.

On the day we raised a fabulous £420.33

for the society and raised a huge amount of awareness

amongst the general public. Jennifer Ames said: “Gordon and

I enjoyed the time we spent there. Yes it was hard work but

the tiredness was more than made up for by some lovely

people we met, many were interested and caring. Some

asked why they had not heard of Scleroderma before though

they had heard of Lupus, and found it hard to believe a suf-

ferer could be affected in so many ways. I was selling plants

and books I gave away a pack of snowdrops and a parsley

plant, and the recipients, a young couple and an elderly lady,

were so pleased they beamed from ear to ear. I asked the

elderly lady to remember us when the Snowdrops flower

next year, I hope that she is still around. It has been a hard

winter and an early spring for us but we certainly got a lift

when total strangers showed they care.”

Thank you to all of the volunteers who made the day

possible; Jennifer and Gordon Ames, Jacqueline Cox

and Helen Mason and to the Waitrose Management;

Andrew Yip, Pam Edwards and Tim Fielding for their

support. We are proud to be working in partnership

with this store and are planning another event to

celebrate World Scleroderma Day in June.

If you live close to Waitrose, Newport and would

like to be involved with this event please get in touch

with Amy, [email protected].

Photos: Top: Andrew Yip, Pam Edwards, and Amy Baker.

Middle: volunteers fundraising on the day and bottom:

Tim Fielding, Jacqueline Cox and Jennifer Ames.


Dancing down the Road of Life,

winning essay of “Vision 2043 –

my ideal world for people with a

rheumatic or musculoskeletal

disease”

I imagine the road of my childhood

lying before me, feeling the pavement

beneath my bare feet, letting myself

follow it, losing myself in the feelings

and thoughts of bygone days.

I take the first tentative steps and let

my thoughts carry me off to a time

when the wind blew in my hair. How

my tiny little feet ran and ran, intoxi-

cated with the speed, an intoxication

that spread to my stomach, forcing

from me squeal upon squeal of childish

delight.

I remember carefree summer evenings

with dew between my toes, splashing

about in water and exploring treetops,

looking for the next foothold. Those

little feet carried me high and low. The

world was mine.

The feeling of freedom grows in me,

and fearlessly I take the next step

along the road of my childhood; this

step brings memories of a youth filled

with pain, recollections of a slow, test-

ing journey. Remembering how the

freedom of childhood turned into a

bodily imprisonment, dwelling on the

pain, letting it enter me, allowing my-

self to be overwhelmed by it, wallow-

ing in it.

The next step is a huge battle. It is a

battle against my own desire simply to

give up – to give up and crawl into a

safe hiding place away from the little

needles that now cover the pavement.

Yet the battle has to be fought – not

just the battle against the disease, but

also the battle for the right to exist in

a competitive world where illness is

unwelcome.

Those stubborn feet, that stubborn

spirit, take me several steps further.

Memories of trying out medicines that

don’t work or have terrible side ef-

fects disturb me and beg me to carry

on fighting. The little needles are still

spread before my feet, beckoning,

taunting; and feelings of powerlessness

ride roughshod over my fighting spirit.

One mighty step more and I look back

down the road of my childhood, my

youth and my adulthood. I see my life

as I have lived it up until now. I turn

and open the door to the life to which

the battle has led me – not just my

battle, but the researchers’ battle, the

doctors’ battle… The battle for the

bearable, dignified, wonderful life of-

fered in 2043.

My feet stride stubbornly, greedily,

further on into life, and many doors

open along the way. The battle has

ceased because my body is now able

to work, to live. The researchers have

found a way to tell which medicine will

work for which person, so life does

not revolve around spending time and

resources trying out different medi-

cines. Types of medicine have been

found that work gently, but are so

effective that the disease is sup-

pressed, to the point that my feet now

skip along without any fear of needles

on the pavement.

My body is at peace, and the devastat-

ing exhaustion gradually leaves me as

my feet dance along. The taunting nee-

dles have been swept aside and if ever

they do creep back onto parts of the

pavement, it is only for a little while

because pain relief has become so

much more holistic and effective.

In this life, we are not given

a diagnosis to be hung up as

And The Winner is...

Marinka Stein Due Sørensen, from Denmark

wins the 2014 Stene Prize

“I’m originally from Ribe – an old and exciting city with a lot of history. I

now live in the countryside near Silkeborg in one of the most beautiful

parts of Denmark. I love to visit the forest or to walk by the sea. I spend

most of my time with my family. I have been married to my husband Mi-

chael for 12 years. We have two lovely sons: Valdemar who is eight years

old and Storm who is three. I am currently unemployed because of my

illness, but I used to work as a teacher. I am educated to teach literature,

history, biology and arts. I paint pictures and I love art in all forms. I read a

lot and I enjoy being told a good story, whether it is a book or a film. I

work out three times a week to keep my body fit – it also has a good effect

in terms of my illness. In the summertime, my family and I visit different

museums and marketplaces, where we re-enact the life of the Vikings. It is

a hobby we can share as a family and we have a lot of friends in the ’Viking

society‘ from all over Europe.”

Scleroderma News: Stene Prize Winner

Scleroderma News: Competition

[Continued…]

a warning sign; we get a diagnosis but

at the same time we are told that we

can be perfectly healthy, happy and

active people who have rheumatism.

In this life, a person with rheumatism

is regarded as a strong person – a

person who is capable and willing.

Knowledge and shared humanity give

us the desire to find our place in life,

to discover what we can do better

than anyone else. If our bodies some-

times suffer a day’s sickness, there is

an effective safety net that catches us,

supports us and helps us. No more

dreams will be shattered on that nee-

dle-strewn pavement!

I stand in this life and let it embrace

me, relishing the knowledge of how

the battle has been won with the

help of research, skill, understanding,

humanity and those ever stubborn

feet.

While I bask in this embrace, I see

my two lovely sons striding along the

pavement, their father between them

holding their hands. They are smiling

and laughing, and behind their smiles

there is no worry that something

might happen that will hurt their

mother. They are just genuine, joyful

smiles. They let go of their father’s

hands, and their little feet carry

them, wind-blown and squealing into

my arms where they are met by a

dance and a song of life.

This is my journey, but also that of

many other people. My hope and my

dream is that, like everyone else who

has a rheumatic disease, I will be able

to stand in this life in 2043 and reap

the rewards of all the battles that

have been so well fought!

By Marinka Stein Due Sørensen

This year we are looking to our mem-

bers to produce an artistic piece to

symbolize what this years World

Scleroderma Day theme means to

you.

The theme ‘Turning toward the Sun’

was inspired by Paul Klee’s, 1933 sun-

flower piece.

To take part in this competition all

you need to do is send in your art-

work by Friday 20th June. An external

panel will then judge all the work and

decide upon a winner.

The winning artwork will become the

cover for the next Scleroderma

News.

Artwork will be displayed at the

World Scleroderma Day Celebration

on the 3rd July and then at our Annual

Conference on the 19th July in Lon-

don.

Send your artwork to: Art Competi-

tion, The Scleroderma Society, Bride

House, 18-20 Bride Lane, EC4Y 8EE.

Please note we will be unable to return

artwork unless a stamped addressed

envelope or container is provided.

Inspired By Paul Klee

Art Competition

^ Klee’s portrayal of the Sunflower is a work of art

Scleroderma News: World Congress Feature

The World Congress is an oppor-

tunity for scientists, clinicians, allied

health professionals and others with

an interest in systemic sclerosis, in-

cluding people with scleroderma

themselves, to come together and

find out about the latest updates and

news from across the research

world. The patient arm of the con-

gress enables people with scleroder-

ma and their friends and families to

find out more about the condition,

hearing from leading experts across

the world.

The congress opened with a

ceremony including a welcome from

Alexandra Klee, the patron of the

World Scleroderma Foundation. An-

nie Kennedy, President of FESCA

(Federation of European Scleroderma

Associations, an umbrella group of

patient support organisations in Eu-

rope), gave a thought-provoking

speech from the patient’s perspec-

tive. The opening scientific lectures

then gave an overview of the cutting

edge in scleroderma research and

what’s new in that field over the last

two years. Thursday also saw a

round-table networking session for

leaders of patient groups where the

discussion centred on the main chal-

lenges faced by the patient organisa-

tions in different countries. While

some countries have strong back-

grounds in fundraising, this is very

much a cultural phenomenon some-

what localised to certain countries

such as the UK and the US, where

we have a culture of partaking in

sponsored events and other activities

to raise funds for charitable causes.

We are lucky this exists in the UK, as

the majority of our European and

global counterparts don’t enjoy such

a proactive fundraising culture, as the

representatives from patient groups

in other countries explained to us,

thus making finding income a lot

harder for them. Other issues dis-

cussed around the table were prob-

lems faced by patient groups in some

countries where scleroderma is not

recognised as a rare disease and as

such does not receive sufficient fund-

ing. In other countries, access to, or

even existence of, scleroderma clinics

was a real concern.

Now let’s move on the med-

ical sessions, where the programme

kicked off with Professor J. van Laar’s

talk entitled, “Why did I get sclero-

derma and will I be cured?”. Profes-

sor van Laar is Professor and Chair,

Department of Rheumatology & Clin-

ical Immunology, University Medical

Center Utrecht, the Netherlands.

The questions he posed were:

Why did I get

scleroderma? And

will it be cured?

His answer to both questions was:

The good news is we have an answer!

- The bad news is the answer is that

we don’t know! Prof. van Laar de-

scribed the scleroderma puzzle as

consisting of many questions involving

fibrosis, fibroblasts, growth factors,

skin, genes, immune cells, environ-

ment, autoantibodies, and more. He

explained scleroderma is thought to

be an autoimmune disease, and that

autoimmune diseases arise when the

immune system “goes awry”. He de-

scribed the immune system as being

like an “orchestra of like-minded mu-

sicians. Practice and fine-

The Third World Congress on

Systemic Sclerosis, Rome 2014

This February we returned to Italy, to the capital city of

Rome, following on from the inaugural congress in Florence in

2010 and the second in Madrid in 2012. Susie Hoare reports...

Photo: Professor J. Van Laar speaks at the World Congress

tuning are everything.”

Prof. v Laar highlighted the

following as evidence that scleroder-

ma i s an au to immune d i s -

ease:Scleroderma autoantibodies can

be detected in the blood of (most but

not all) scleroderma patients;

Limited and diffuse scleroderma are

associated with different autoantibod-

ies; Immune cells in scleroderma are

abnormally activated; Studies on

DNA from scleroderma patients have

revealed genetic factors involved in

immune responses.

He went on to look at some

very interesting information regarding

lessons learned from twin studies:

studies on identical twins have actual-

ly shown a low concordance for scle-

roderma, indicating scleroderma can-

not be explained by genetic factors

alone. When one identical twin has

scleroderma, it is rare for the other

twin to also have scleroderma.

Prof . v Laar then spoke about the

risk factors for increasing the risk of

developing scleroderma: Genes

(mostly related to immune function);

Female gender; Possibly chemicals (in

some situations). The risk factors

influencing the severity of scleroder-

ma: Male gender; Higher age; Smok-

ing.

Prof . v Laar closed by ex-

plaining, although we don’t yet know

the cause and the cure, we’re getting

there thanks to: Promising results

from recent clinical trials (ASTIS);

International collaboration between

patients, scientists and doctors

(EUSTAR, World Congress, etc);

Rapid spread of news via the Internet.

Continuing on the next international

speaker, we heard Professor Distler

of University Hospital, Zurich, Swit-

zerland, speak about why breathing is

so difficult for some people with scle-

roderma.

In short, it is multifactorial,

with many possible reasons. The most

frequent in systemic sclerosis are lung

fibrosis and pulmonary arterial hyper-

tension, leading to impaired gas ex-

change. Professor Distler also ex-

plained that problems can be caused

by tight skin, as breathing requires

elastic skin so the chest can expand

to inhale. If you have tight skin, this

can limit the amount you can expand

your chest and makes breathing hard.

Lung fibrosis, which occurs in some

people with systemic scleroderma,

causes scar tissue formation in the

lungs. Having scar tissue in the lungs

impairs the ability of the lungs to ex-

change gas efficiently, leaving people

short of breath.

Pulmonary hypertension,

which is raised blood pressure within

the pulmonary arteries (the blood

vessels that supply the lungs), also

causes impaired gas exchange, leaving

people breathless or finding breathing

hard. Professor Distler showed us the

“line-up” for a typical day of testing

for patients at his clinic:

9 am Blood tests, capillaroscopy

10 am Echocardiography

11 am Cardiac MRI

1 pm CT lungs

2 pm Occupational therapy

3 pm Lung function, 6 MWD

4 pm EKG

5 pm Consultation with doctor

The goal of testing for lung disease is

early detection, leading to early treat-

ment and better outcome. The causes

of difficulties in breathing are multifac-

torial, and if someone has problems

with breathing, all the possible causes

should be examined.

Following on from Professor

Distler’s talk, we then heard about

breathing problems from a

patient’s perspective, and


Photos: Above Professor O. Distler and below Professor C. Denton.


[Continued…]

and what you can do to help yourself

and make life easier. The presenta-

tion was given by Kim Fligelstone

from the UK, with input from a range

of sources including people with scle-

roderma, doctors, and medical asso-

ciations supporting people with lung

conditions.

Kim gave us a vast array of tips pro-

vided by people with difficulties

breathing, and this is a selection of

some of those:

Conserve your energy:

Put everything you need within your

reach, cupboards and wardrobes you

don’t have to bend for, oOrganise

yourself and keep items in the same

place

At home:

Avoid bending, lifting or overstretch-

ing. Use light vacuum cleaner and

irons, sit down where possible e.g.

ironing, food preparation. Use a

kitchen timer, a tray or trolley.

Washing and dressing:

Put on bathrobe after washing / use

separate towels, avoid bending for-

ward drying feet, have seats every-

where e.g. - in shower, by sink, by

mirror. Wear loose clothing so it is

easier to dress yourself. Cut sock

elastic and use a long-handled shoe

horn.

Bedroom:

Get up slowly, relax. Use lighter du-

vets. Two single mattresses on dou-

ble bed. Use extra pillows to raise

head. Put oxygen concentrator out-

side bedroom.

Going out – plan ahead:

Avoid rushing: plan journey time.

Walk at your pace and consider a

walking stick. Consider a wheelchair

too. Spread shopping into lots of

bags! Keep spare medicines in car

and with you when travelling.

If you are interested in reading the

full set of tips from this presentation,

you can download this presentation

as well all the others from the con-

gress, from the following link on the

FESCA website: http://www.fesca-

s c l e r o d e r m a . e u / w o r d p r e s s / ?

page_id=368

In the next issues of Scleroderma

News, we’ll continue with more de-

tailed reports from the other presen-

tations. We hope you look forward

to hearing about the following topics:

Gastrointestinal problems that peo-

ple with scleroderma may experi-

ence, Dr. Janet Pope of the Universi-

ty of Western Ontario. Tips for help-

ing yourself live with GI problems,

useful equipment and tips for day to

day life with scleroderma. The New

ACR-EULAR systemic sclerosis clas-

sification criteria from Dr. Frank van

den Hoogen, Radboud University

Medical Centre and St Maartensclin-

ic, Nijmegen, The Netherlands. Taking care of your ulcers, Barbara

Gemmell, St. Vincent’s Hospital, Mel-

bourne. Carers and family member,

Robyn Syms, President, Scleroderma

Australia. Fatigue and how to deal

with it, Dr. Janet Poole, Professor in

the Occupational Therapy Graduate

Program, University of New Mexico.

Photos: Above and below Professionals, speakers and patients from around the world gather at the World Congress.

Why Not Attend Our

Educational Event?

On the 3rd July , you are invited to

join us at the Royal National Hospital

for Rheumatic Diseases, Bath, to cele-

brate World Scleroderma Day

through an exciting educational

event.

The day will be split

with a patient focused

event in the morning

looking at ‘what you

can do to help your

Raynaud’s and Scle-

roderma? ’ and

‘current and future

treatment options for

scleroderma’.

The afternoon will be clini-

cian/AHP focused providing an

overview on pathogenesis, clinical

features and practical management of

Raynaud’s phenomenon and systemic

sclerosis.

For further information and to book

your place visit: www.scleroderma

society.co.uk/WSDCelebration2.php

In partnership with the Raynaud’s and

Scleroderma Association

Scleroderma News: World Scleroderma Day

27th June – 29th June:

This year support us by wearing your

brightest blue for World Scleroderma

Day. You can raise funds in your

workplace by getting your colleagues

to wear their brightest blue and do-

nate £1 or more to the Scleroderma

Society UK.

You can host a bright blue event! Why

not get out in the sunshine and have a

picnic or organise a local walk?

Order your free fundraising pack to-

day by email:

[email protected]

We would love to see pictures of you

“Being Bright, Being Blue” to feature

in our website gallery and in our

newsletter. Please send all pictures to

[email protected].

To find out more about how you can

be involved in this event vis-

it:ww.sclerodermasociety.co.uk/

BeBrightBeBlue2.php

Be Bright and Blue to

Support Scleroderma

Preparing For World Scleroderma Day 29th June 2014

mailto:[email protected]

Scleroderma News: Scientific & Medical

One of the main problems in sclero-

derma and systemic sclerosis, at the

tissue and cell level, is fibrosis. This is

an out of control wound healing pro-

cess causing excessive scar formation

in e.g. the skin and lungs, leading to

the tightness of the skin, reduced

organ function and life threatening

consequences in severe cases. At the

Royal Brompton Hospital, one of our

research goals is to study in detail the

key effector cells in fibrosis, fibro-

blasts, to understand why, in disease

circumstances, they behave in an un-

controlled manner. We want to iden-

tify the key regulators of this behav-

iour, and find compounds (drugs)

which can interfere with these to

slow down disease progression. De-

scribed here is an example of the

work we undertake.

The shape of the cell, and

certain functions like movement, are

supported and regulated by a dynamic

mesh of thin stiff fibres spanning the

inside of the cells, forming a part of

the so called cell cytoskeleton. These

fibres are made of a group of proteins

called actins (stained red in the pic-

ture). Cell movement, for example, is

controlled by these fibres growing at

one end of the cell, causing a protru-

sion, and at the same time being dis-

mantled at the opposite end, causing

that end of the cell to retract, or

shrink. This process is also helped by

specific proteins on the outside of the

cells, grabbing on to and holding the

surrounding tissue at the front end,

and at the same time letting go at the

back. When specific types of cells,

including fibroblasts, are exposed to

certain types of stress, e.g. excessive

pulling stretch, pressure, or are ex-

posed to biological substances, e.g. in

response to injury, they adapt by bun-

dling the thin actin fibres together to

form thick rod-like fibres, also called

stress fibres (red in the picture), in

order to become stronger. A particu-

lar type of actin protein, called alpha-

smooth muscle actin (aSMA), is pro-

duced in fibroblasts exposed to ex-

cessive or prolonged stress (stained

green in the picture). This protein is

normally expressed in smooth muscle

cells, for example making up layers in

our blood vessels. When this type of

actin gets incorporated into actin

fibres in fibroblasts (in the pictures,

making the red fibres appear yellow),

the cells can contract like muscles, i.e.

they pull at both ends and become

shorter and thicker – the actin fibres

have become like microscopic rubber

bands. When this occurs, the fibro-

blast is called a myofibroblast (myo

meaning muscle). In smooth muscle

cells in blood vessel walls, such con-

traction causes a narrowing of the

lumen (the middle space where the

blood flows), and the pressure in-

creases inside the vessel. The con-

traction and relaxation of these cells

is a normal process to regulate blood

pressure, but if excessive can cause

problems like high blood pressure

(hypertension). In myofibroblasts, this

contracting property is essential for

wound healing, as it makes the cells

pull the damaged tissue together to

repair and close the wound. During

this process the myofibroblasts will

also secrete factors, which break

down damaged tissue scaffolding ma-

terial (extra cellular matrix, ECM),

like collagen, and produce fresh ECM

to replace and build up the tissue

again. It is when these processes, con-

traction and ECM production, be-

come excessive, we get scar tissue

formation. This pathological condition

in the tissue of organs such as skin or

lung is termed fibrosis. Fibrosis is

primarily caused by either an uncon-

trolled accumulation of fibroblasts/

myofibroblasts in the injured or in-

flamed tissue, or a greater proportion

of fibroblasts developing into myofi-

broblasts, both resulting in excessive

scar formation. At the Royal Bromp-

ton Hospital, London, we are in

search of drugs which can

stop the progression of

Myofibroblasts: How the study of cells can

help find treatments for Scleroderma

By Dr Gisela Lindahl, Royal Brompton Hospital / National Heart & Lung Institute

Photograph taken by Dr Patricia Leoni-Garcia

Dr Mark Porter's Case Notes on

Radio 4 has prompted the question to

the ScSocHelpline on safety of using

Omeprazole and similar medication -

given the new findings.

The question is; If people with Scle-

roderma have been taking these types

of drugs for many years is there cause

for concern and should they stop

taking as suggested to test if they still

need them?

Answer:

Although long term use of proton

pump inhibiting drugs like omeprazole

does have some potential side effects

the benefit of being on these treat-

ments for scleroderma patients gen-

erally outweighs any risk. This is

quite different from the widespread

use of omeprazole in people without

scleroderma. Acid reflux in sclero-

derma can otherwise lead to scarring

or stricture of the oesophagus that

may require surgery or might worsen

lung fibrosis. Nevertheless it is sensi-

ble to have routine blood tests in-

cluding magnesium levels checked,

especially if your doctor is concerned

about possible side effects.

Question: Does anyone know if there

has ever been any research conduct-

ed into the use of artificial sweeten-

ers (aspartame) and Raynauds? I just

saw a comment about it causing auto-

immune issues. I have used artificial

sweetener most of my life and was

just wondering!

Answer:

Aspartame may cause blood vessels

to narrow, like caffeine and some

other chemicals. In theory this could

worsen Raynaud’s phenomenon but

there is no major evidence to support

this and I am not aware of specific

research into this area. Many sub-

stances can make symptoms worse

and if individual sufferers notice this

then they should avoid them but at

present there is no official concern

about aspartame of any other artificial

sweeteners being harmful.

Got a question? Send it in to us and

we will do our best to get it an-

swered for you next issue!

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.


[Continued…]

fibrosis and are therefore trying to

identify compounds (drugs) which

can block either of those process-

es, fibroblast accumulation, or so

called fibroblast-to-myofibroblast

differentiation. We use a Carl

Zeiss fluorescence microscope

(kindly funded by the Scleroderma

Society) to study fibroblasts/

myofibroblasts from scleroderma

patients, and can by staining the

cells using specific antibodies and

dyes determine e.g. how many

cells contain the aSMA type of

actin stress fibres. We can then

treat the cells with different com-

pounds to see whether they affect

the number of aSMA containing

cells. We are currently testing a

novel compound, originally devel-

oped for the treatment of cancer,

which appears to have the main

characteristics required also for

combatting fibrosis. Some of our

results were reported at the annu-

al conferences of the American

Thoracic Society and European

Respiratory Society last year.

While we know that extensive

testing over a relatively long peri-

od of time will be required to de-

termine the suitability of this drug

for treatment of fibrosis, and of

course the safe use in patients, we

are at a very exciting early stage of

research into a new potential drug

for scleroderma.


Inside Health has learned that there is

growing concern in some quarters that

we have become too quick to use them –

a problem compounded by the fact that,

once you start the drugs, they can be

difficult to stop. For long- term users,

should we as was suggested stop taking

the medication for six weeks to see if

symptoms disappear, have regular blood

tests for magnesium levels?

Proton pump inhibitors (PPI) have

transformed the treatment of acid

related disorders in gastroenterology

over the last 20 years and are incredi-

bly effective at suppressing acid pro-

duction in the stomach. When they

were initially used we felt that since

they had so few apparent side effects,

we were very relaxed about using

them freely and often for long periods

of time if they were effective. This has

led to PPI prescription numbers being

one of the largest of any drug world

wide and many people end up on

them long term. In the general popu-

lation we know that this is not always

(in fact often not) necessary. Recent

large studies have suggested an in-

creased risk of low magnesium levels,

osteoporosis and an increased risk of

picking up hospital acquired lung and

gastrointestinal infections.

The vast majority of the general pop-

ulation taking PPIs will only need

these for short periods and have no

underlying pathology or disease that

requires long term treatment. In scle-

roderma the situation is however

different. Up to 90% of scleroderma

patients will have oesophageal symp-

toms due to change in gullet motility

and this leads to a high prevalence of

acid and gastric content reflux. Con-

stant uncontrolled reflux can lead to

stricturing (narrowing) in the oesoph-

agus (which makes swallowing worse

and may need dilatation), Barrett’s

oesophagus (a change in the lining of

the oesophagus which can increase

the risk of cancer) and there is in-

creasing evidence that a group of pa-

tients may aspirate/inhale small

amounts of acid which in turn makes

pulmonary fibrosis/scarring worse.

There is still some debate as to

whether all scleroderma patients

should be on a PPI. The UK Sclero-

derma Study Group has recently

looked at this and the treatment of

other associated gastrointestinal

symptoms and the consensus was

that a PPI should be used in all those

that are symptomatic since any small

risks of long-term use are outweighed

by the benefits. There will be some

patients that can come off these med-

ications, but the vast majority will

not. Given the current paucity of oth-

er effective treatments and the fact

that surgical intervention is unwise,

we would are very happy to recom-

mend long term use in patients with

scleroderma, with the caveat of

course that we regularly review the

need and dose of all medications.

Omeprazole, Lansoprazole & The Proton

Pump Inhibitor Family

By Dr. C Murray

'Vision 2043' competition 2014: Your Chance to Get Your Hands on €300!

The World Arthritis Day competition

runs until Friday 18 July 2014. Grab

your chance to help to change the

future for people with rheumatic and

musculoskeletal diseases (RMDs) by

entering the 'Vision 2043' competi-

tion. You could win a cash prize.

There will be two winners: The Euro-

pean entry (from a EULAR member

country) which has received the most

online votes., and The Global entry

which has received the most number

of online votes. Winners will each

receive 300 Euro!

The European winner will also win

attendance to the 2014 EULAR Annu-

al European Conference of PARE in

Zagreb, Croatia.

Two runners-up will each receive 50

Euro and up to seven entries will be

chosen by the Vision 2043 jury for

commendation (no cash prize).

Anyone can vote so make sure you

tell your family and friends about your

entry!

See www.worldarthritisday.org/

vision2043 for more

information.

http://www.worldarthritisday.org/vision2043

http://www.worldarthritisday.org/vision2043

AGM / Annual Conference

This year the Scleroderma Society’s AGM and Annual Confer-

ence will be held on 19th July at the Royal Free, 11- 12:00 and

12:00-16:30 respectively...

Scleroderma News: Annual Conference 2014

The Scleroderma Society were at the

British Society for Rheumatology's

annual conference in Liverpool last

week. We jointly shared a stand with

the Raynaud's and Scleroderma Asso-

ciation to raise awareness of the con-

ditions amongst health professionals.

The event provided us with

the opportunity to meet many of the

researchers who are working hard to

fight scleroderma and it's associated

symptoms, and to inform allied health

professionals of the condition and of

the Society. The event also provided

us with the opportunity to meet oth-

er patient organisations whose condi-

tions have associated symptoms of

raynauds and scleroderma - Lupus

UK and Arthritis Care. We look for-

ward to developing these relation-

ships and working closely with them

to assist in supporting you.

We would be delighted for any mem-

bers, patients, carers, health profes-

sionals or individuals with an interest

in Scleroderma to attend.

The theme of the day will be

‘therapies’ and we are pleased to an-

nounce that we will be joined by

Consultant Rheumatologist Professor

Chris Denton, Specialist Registrar for

Rheumatology, Doctor John Pauling,

Professor of Clinical Rheumatology,

Jaap Van Lar and Clinical Nurse Spe-

cialist, Colin Beevor.

In addition to the sessions

we have confirmed an excellent varie-

ty of peripheral activities for the day.

This includes Changing Faces’ skin

camouflage team and the Royal Frees

Therapies Team for complementary

sessions on skin care. Scleroderma

Society’s Helpline team will also be

present to answer any questions and

meet the members. As-per we will

also be holding our raffle with our

best-ever selection of prizes!

We hope you are able to

join what will be a thoroughly enjoya-

ble and thought provoking day.

To view

the full programme

and to register your place

please visit: http://www.scleroderma

society.co.uk/AGMampAnnual

Conference2.php or complete and

post the form attached.

British Society for Rheumatology:

Annual Conference 2014

“I began my role as Project Coordinator with the Scleroderma Society in

January. I have thoroughly enjoyed my time so far with the Society; the

Trustees and staff are extremely encouraging and supportive and it’s been a

joy to see how highly involved the members are.

I also work part time with the Arthritis and Musculoskeletal Alli-

ance (ARMA) in the same role. ARMA is an umbrella organisation for mus-

culoskeletal organisations and this is how I learned about scleroderma and

the Society, in addition to working in the same building as them.

The Society will be holding its AGM and Annual Conference at the

Royal Free on the 19th July. I have been working closely with Professor

Chris Denton to finalise the programme and to ensure the day is as in-

formative as possible. We will also be joined by Changing Faces’ camouflage

team and the Royal Frees Therapies

Team for complementary sessions on

skin care and hand massages.

I look forward to meeting

many of you on what is promised to be

an extremely informative and enjoyable

day.”

http://www.sclerodermasociety.co.uk/AGMampAnnualConference2.php



Congratulations to Amy!

We are extremely

pleased to announce that

Amy, our Fundraiser, was

awarded her Gold Duke

of Edinburgh award by

HRH The Earl of Wessex

at St James¹s Palace this

month.

To achieve the award

Amy undertook a four-day and three-

night expedition in the Black Mountains,

where her group had to survive in ‘wild

country¹ and navigate their way to their

final pick up point.

Amy has voluntarily been undertaking this

physically demanding challenge over the

past year to gain this award and we are

delighted with her achievement!

Can you solve the Sclero-crisscross?

Focusing on: Scleroderma

Medications and Treatment Options

Immunosuppressive Therapy

The following is an excerpt from chapter 23 of Systemic Sclerosis, 2nd Edition written by Dr. Laura Hummers and Dr. Fred Wigley:

‘The most popular approach to controlling the inflammatory phase of scleroderma is the use of immunosuppressive therapy.

The rationale is that an autoimmune process is causing the inflammation and the downstream result is tissue damage and

fibrosis. In this model, the fibrosis is an “innocent bystander” that is driven by the cytokines (chemical messengers) pro-

duced by the immune system. There are several drugs that are being used, but only a few well designed studies have been

performed. These immunosuppressing drugs include methotrexate, cyclosporine, antithymocyte globulin, mycophenolate

mofetil and cyclophosphamide. A recent study suggested that methotrexate did not significantly alter the skin score (a meas-

ure of skin thickening) compared with placebo (no treatment). Cyclosporine is not completely studied due to reports of

renal toxicity. The most promising drugs are mycophenolate mofetil or cyclophosphamide with or without antithymocyte

globulin. Unfortunately, there is no placebo-controlled study (i.e., half the patients get the medication and half get a sugar

pill) to define their exact role in treating scleroderma, but if used during the active inflammatory phase of the disease, they

appear to work. A major area of current research is the use of aggressive immunosuppressive therapy either with very-high-

dose cyclophosphamide or with autologous bone marrow transplantation. Because these aggressive forms of immunosup-

pressive therapy have potential risks, they should be used in severe cases of scleroderma and administered as part of a re-

search protocol.’

For a more in-depth understanding of the comprehensive care related to scleroderma download Chapter 23 of Systemic Sclerosis (pdf)

by Dr. Laura Hummers and Dr. Fred Wigley, from: ttp://www.hopkinsscleroderma.org/patients/scleroderma-treatment-options

Scleroderma News: Pharmacy

Break Time

Notice board Local Contacts and support services

Inspirational Quote of the Season “A healthy attitude is contagious but don't wait to catch it from others. Be a carrier.”

- Sir Tom Stoppard, OM, CBE, FRSL, Czech-born British playwright, knighted in 1997.

Bedfordshire

Rita Boulton

[email protected]

01767 312544

Buckinghamshire &

Hertfordshire

Marilyn York

andrewandmarilyn@bt

internet.com 07702 592 387

Burton on Trent

Helen Nutland

[email protected] 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

[email protected]

.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

[email protected]

01482 354312

Essex, Kent & East London

Amanda Thorpe

[email protected]

01702 344925

Hampshire

Tracey James

[email protected]

02392 677476

Lancashire & North West

Yorkshire

Sheila Procter

sheila@sclerodermasociety.

co.uk 01282 429004

Merseyside

Helen Lingwood

[email protected]

0151 2801194

North East England

Jessie Pickering

01388 527840

North East Scotland

Susan Wilson

[email protected]

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

[email protected]

01544 267988

Scotland

Frances Bain

[email protected]

0131 477 1122

South London

Celia Bhinda

[email protected]

020 8698 6294

South Wales

Belinda Thompson

belinda@sclerodermasociety

.co.uk 02920 625056

South West England

Judith Foster

[email protected]

07985 335 336

Surrey

Nicky O'Shea

[email protected]

01483 764524

West Midlands

Jane Beach

[email protected]

01527 459552

West Sussex

Lesley Dodd

[email protected]

01903 753971

West Sussex

Jo Frowde

[email protected]

01403 741445

Wiltshire & North Hampshire

Lynn Morton

lynnm@sclerodermasociety

.co.uk 01980 863444

Local Group Co-ordinator: Liz Holloway

[email protected], 01243 539466

Join us on Facebook!

www.facebook.com/

sclerodermauk

Online Support

We have set up a new

and complementary

community powered by

Health Unlocked. If you

are a Facebook user you

may have seen advertise-

ments pop up on your

page. Why not give both

the forums a go? Have a

look around, meet and

get support from other

people with Scleroder-

ma.

Scleroderma News: Local Groups

Contacts

Steve Holloway

(Secretary) steve@

sclerodermasociety.co.uk

Susie Hoare suzie@


Helena Rozga Helena@


Office & Administration

Manager: Amy Barrick

020 7000 1925, amy@


Local Group co-

ordinator: Liz Holloway,

[email protected].

uk

Helpline Manager: Helena

Rozga, Helena@


Event enquiries: Amy

Baker, fundraising@


Events Calendar Calendar

@sclerodermasociety.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:

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, [email protected]

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

383233

Leeds Chapel Allerton

Hospital: Elizabeth Tyas

0113 392 3035

London Royal Free Hospi-

tal Scleroderma queries: 020

783 02326 and Pulmonary

hypertension:

020 7472 6354

London Royal Bromp-

ton 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 In-

gold 02392 286935

Scleroderma News: Contacts

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

april newsletter 2014

Documents

scleroderma society

world scleroderma day

welcome page

amy baker

world congress

amy barrick

time tuesdays

time hollie