Spring Newsletter 2012

© Scleroderma Society 2012

Society and the work it does.

I am still astonished at what

the Society has achieved over

the years. It really is a

testament to the hard work

of the many volunteers

involved. Sustainability is

another challenge. These are

difficult times for us all and

money is increasingly hard to

find. However, the

Society is in a strong

position to go from

strength to strength.

Charities and the

recession

These are difficult

times for all charities

but they have been

especially fraught

for smaller

organisations. This is also a

time of opportunity for

smaller charities like ours.

Developments in new

technology and the

expansion of social media

have made it possible for

smaller organisations to have

an influence far beyond their

size. Today it is possible to

distribute information,

campaign and respond to the

needs of people very quickly

and very efficiently. Being

“nimble on your feet“ makes

all the difference and the way

the Society has been

managed shows that. Over

the next couple of months I

will begin a healthy dialogue

with members of the Society

to see how you want to move

things forward and what you

want the Society to be doing.

I look forward to talking to a

lot of people and hearing

their opinions.

T he Scleroderma

Society has

been

successfully run and

managed by volunteers

for the past 30 years.

Recently, the

organisation was left a

legacy which the

Trustees decided should

be used to move the

Society forward to

develop more and better

services for people with

scleroderma, increase

the amount of money we

raise to help fund

research and to

campaign for greater

awareness of

scleroderma.

The first step in this

programme was the

decision to employ our first

member of staff, a Chief

Executive. We have now

taken this step and

appointed Mike Rich. We

asked him some questions

so our members could get

to know him.

My background

I have had a varied career

working as a fundraiser, in

public affairs for children’s

charities and others in the

sector. For the last decade I

have worked for health

charities. I was the Chief

Executive for the maternity

charity Action on Pre-

eclampsia and then for the

Blood Pressure Association.

Professional achievements

When I was at Action on Pre-

eclampsia, I worked with

obstetricians and midwives to

develop treatment guidelines

which have made a real,

positive difference to the

experiences of pregnant

women. At the Blood

Pressure Association we

introduced a community

outreach programme to

deliver heart health checks to

people often excluded from

mainstream healthcare. It is

important that charities do

not lose sight of the fact that

they are dealing with, first

and foremost, individuals.

Relaxation & leisure interests

I am married and have four

children aged between 18

and 5, so family activities

(running them around!) take

up a lot of my time. I am

kept busy as a trustee of the

Firefighter’s Charity.

Challenges for the Society

The key challenge for the

Society is awareness.

Awareness of scleroderma

amongst a wider audience,

including the public and

health professionals, and

then an awareness of the

Meet Mike Rich, Our First Chief Executive

Scleroderma News

The Scleroderma Society Charity Registration No. 286736

Inside this issue:

Report from Madrid

Congress

2

Health advice from Louise

Parker

3

Fund raising efforts 4

Memories of the 1990s 6

Put Your hands up for

WYGWD

7

Liz and Steve retire from

the Hampshire group

8

EULAR 11

Wear Your Gloves To

Work Day 29 June

12

Special points of interest:

Medical advice

Research progress

A decade of memories

Reports from the regions

Turn to pages 7 & 12 for more on WYGWD

A warm welcome to Mike Rich


I love spring, and autumn for

that matter. Summer I spend

worrying about the heat and

winter about the cold, so it’s

spring and autumn when I can

relax, enjoy the weather and be

grateful I live in a country with

a mild climate.

It’s not just the weather I’m

feeling grateful for. In February

I attended the second world

Scleroderma Conference. Not

only inspiring, the conference

made me think about how

lucky we are to have free

access to good healthcare.

Things may not be perfect,

there may be threats and

inconsistencies but we have a

world-class system which many

can only dream about.

Many people living with

scleroderma carry on their lives

with very little support. While

few would want the condition

to take over completely, a

strong patient organisation in

the background providing

information and support when

needed is a great advantage.

Since joining the Society I have

been amazed by what our

volunteers have achieved over

the last 30 years and the range

of information and support that

is available. With the

appointment of Mike, the

Society’s first Chief Executive,

comes the opportunity to

expand the services that the

organisation provides even

more.

Preparations are also well

underway for our first Wear

Your Gloves to Work Day, a

fundraising day to support

World Scleroderma Day on 29

June. It should be fun and a

good way to help raise both

money and awareness about

scleroderma. All in all many

reasons to be cheerful!!

Richard Dodds

Trustee

A Warm Welcome From Richard

informative. The Scientific

programme was the platform

for the “experts” to present

their research and findings on

their medical and scientific

advances on stem cell

transplantation, organ function

and quality of life, the gut, the

heart, the lungs etc. I followed

the broader concepts, but not

the analysis and statistics.

However, it was evident that

the experts shared and

collaborated to further

knowledge in the field of

Systemic Sclerosis. The

consistent confidence of the

professionals in these indices

and trends should evolve better

awareness, understanding,

diagnosis and support.

The patients’ programme was

just as stimulating, extremely

relevant, and presented in

layman’s terms by the same

experts with technical data and

in percentages and visuals that

I understood. There were

scleroderma specialist speakers

and patient speakers from all

over the world. The UK was

well represented by its

professionals with a lively ‘Doc

Spot’ question and answer

session led by Professor Chris

Denton. Everyone appreciated

his focussed, relevant and

informative answers. There was

also another excellent

presentation from the UK by

Physiotherapist, Will Gregory

(Salford, Leeds) who talked

expertly and with great

empathy on the importance of

exercise in coping with

scleroderma.

I learned a huge amount and

made seven A4 pages of notes.

The nutritionist told me 100

gms of chocolate per week was

good for me! I would like to

thank our hosts in Madrid. A big

thanks too to the professionals

and volunteers for making this a

truly memorable experience

and for their dedication in

helping to make our quality of

life better. Lastly, thanks to

FESCA for organising the

programme for people with

scleroderma.

Helena Rozga, Trustee

World Scleroderma Congress , Madrid February 2012

We touched down at a foggy

Stansted at 7.15pm on 5

February on a snow-covered

runway, tired but extremely

thankful not to have been

delayed. Writing now I am

actually snowed in, with time to

reflect on attending the Second

Systemic Sclerosis World

Congress in Madrid. Expecting

cold winds and temperatures of

2C meant I had packed layers of

clothing, hat, gloves and hand-

warmers. It was very different

to feel the cold in the sunshine.

I felt privileged to go to the

Congress but had no idea what

I might experience or how

encouraging it would be. There

were 1,143 participants, of

whom 261 were

representatives, patients and

family from 30 countries,

double the numbers in 2010.

There were 43 countries

represented, and 306 abstracts

were submitted - amazing!

As I have scleroderma I was

able to attend the “Scientific”

and “Patients’ ” programmes.

Both were extremely

Page 2 Scleroderma Society: Spring 2012

Helena Rozga, Trustee

Richard Dodds, Trustee

Helena says she

learned a huge

amount in Madrid

and invites you to

“Come and hear

physiotherapist Will

Gregory at our AGM

and conference in

July.”


M ore from Louise

Parker, Lead Nurse in

connective tissue disease, at

the Royal Free Hospital,

London, who spoke at our

2011 AGM about the

questions frequently asked

in systemic sclerosis. Thank

you, Louise.

PLEASE NOTE: Louise suggests it is important to remember that everyone is different and that symptoms vary from person to person. They occur at different stages and they occur in varying degrees of severity; no two people are affected in exactly the same way

What joint problems are common in systemic sclerosis and how can they be treated?

Aches and pains are common but are not usually the result of a true arthritis in most people with systemic sclerosis. In the early stages of the disease, excess tissue inflammation causes stiffness e.g. the person may be unable to make a fist, and may have contractures and

pain. For hands, there are exercises, which should be done early on and regularly. Hand waxing can be soothing and should be done often. The Physiotherapy & Occupational Therapy team have advice and aids to help you.

What can you do to help the symptoms of a dry mouth?

There are now better treatments available than previously, such as gels, pastilles, sprays, mouthwashes, sugar free gum and also just sipping water. If you have a dry mouth, it is important to check that a medication you are taking is not the cause. It is also important to have a regular

dental check-up and if necessary, it is possible to be referred to a specialist unit. For problems with oral ulceration, Ad-cortyl ointment can be helpful.

from decreased blood flow; and then red or flushed as blood flow returns and the

affected skin re-warms. When the attack is over, In the “white” or “blue” stages, sensations such as tingling, numbness and coldness may be felt. In the “red” stage, a feeling of warmth, burning or throbbing may be noted. Raynaud’s affects hand function and needs to be

controlled as much as possible.

What is Raynaud’s and what are its treatments?

Raynaud’s is an abnormal

sensitivity to the cold and attacks are painful. The blood vessels constrict or narrow in response to cold or to emotional upset and stress. This disturbance in circulation causes a series of colour changes in the skin: white, blanched, or pale when circulation is reduced; blue as

the affected part loses oxygen

Avoid stressful situations. Use simple, practical approaches, such as hand warmers and

warm clothing to keep warm. Keep your environment at a constant temperature to keep your body core warm. There are natural therapies such as GLA (gamma-linoleic acid), Ginkgo Biloba and ginger, as well as drug therapies, such as Losartan, Diltiazem, Fluoxetine, and in more severe cases, IV

Iloprost.

More from Louise Parker at the Society’s 2011 AGM Conference

What can you do to help fatigue?

Fatigue is common early on and throughout the disease and can occur in flares. If you experience fatigue, it is important to eliminate other causes such as anaemia. Fatigue can reduced once your condition has stabilised. It is a good idea to learn time management strategies and

pacing.

There are many other problems that have not been mentioned here, so if there are

other things that affect your work/social life, affect your appearance/confidence, or cause frustration and upset, you can phone us on the Specialist Nurse Advice Lines. Our team aims are to provide support and reassurance, disease and drug information, education and advice along

with practical help. You will find the phone numbers in the Contacts list on page 9.

What can you do to help with dry eyes?

If you have dry eyes, you need to protect your eyes and avoid direct draughts (e.g. in the car). To treat mild problems, you can try Liquifilm, or other dry eye drops, which are available over the counter. For severely dry eyes, there are treatments like Viscotears, gel tears, and Lacrilube which can be used at

night. There are plenty of different ones to try if one doesn’t work for you.


Louise Parker, Lead Nurse in connective tissue disease at the Royal Free Hospital, London

Finger exercises

Practice making a fist

and then stretching all

your fingers out like a

star.

Touch each one of

your finger tips with

your thumb tip. Now

gently slide your

thumb tip down the

side of each finger.

With your hands face

down on a table lift

each finger up in turn.

Gloves Galore! Have you chosen your gloves for WYGWD on 29 June?

Get your copy of The

Scleroderma Society’s

leaflet ‘The Fingers in

Systemic Sclerosis’ at

ww.sclerodermasociety.co.uk

or contact the office on

020 7000 1925


T he long months of dark

and cold winter training

have drawn to a close for the

Society’s marathon runners

who are prepared and fit to

take on the challenge of

running 26.2 miles.

This year there are ten brave

souls pounding the pavements

for such a great cause; nine

(Ally, Gary, Matt, Rob, Kevin,

Jim, Amy, Stephanie and Susie,

will be running in the London

marathon on 22nd April and the

tenth, Lee, will be flying the flag

for the Society in the Brighton

marathon one week earlier.

Between them all, they have

run about 6,000-7,000 miles in

training since January!!!

They’ll all don the blue Society

running vests to raise as much

awareness as possible, and we

hope they’ll all wave madly at

the TV cameras! Let’s wish

them loads of luck for the big

day and send our thanks for all

the time and effort they and

their families have invested into

their training and fundraising

activities. We look forward to

hearing the post-race reports

from them all!

Susie Hoare, Trustee

Good Luck to all our Marathon runners

people with conditions that

affect their appearance. It will

receive the attention needed to

develop to its full potential so

offering the best possible

service to the beneficiaries and

our NHS partners.

We are delighted that almost

100% of the current Red Cross

service volunteers have now

transferred their skills and

experience to Changing Faces

ensuring people will continue

to receive the same high quality

skin camouflage advice they

need now and into the future.

The formal transfer to Changing

Faces took place on 14

November 2011 and clinics have

been phasing over as we

continue to work together to

ensure a smooth handover both

nationally and locally. Changing

Faces will have full management

responsibility for all skin

camouflage clinics and

volunteers across the UK from

29 February 2012. More

information may be obtained

from the Changing Faces

website

www.changingfaces.org.uk/Skin

-Camouflage or by phoning their

dedicated phone number 0300

012 0276.

Skin Camouflage Service transfer to Changing Faces

The Red Cross has been

working closely with Changing

Faces, the leading not-for-profit

organisation supporting and

campaigning on behalf of

people with conditions that

affect their appearance, to

agree the transfer of the skin

camouflage service and both

organisations are really

delighted to have found such a

good fit for this exceptional

work. Within Changing Faces,

the service has an exciting

future as a key aspect of the

range of provision in a charity

where all the work is focussed

on the lives and experiences of


Karen Cook on the left at her

60th birthday party.

Emma Noble Team Leader at the Princes Trust in Kirkintilloch sent a cheque to the society for £549.97 which the young people on her Princes Trust team number 12 raised through another bag-packing day in Asda.

They are Laura Day, Suzanne Banks, Karen Lai, Lynn Gilbert, Kayleigh Mackie, Laura Wylie and Connor McFadden. Thanks to all for raising awareness as well as the super sum of £549.97.

Christmas Sparkle!

Yvette Saggers organised a Christmas Sparkle Evening in November, with lots of stalls. She sold mulled wine and mince pies and raised £450. Yvette thinks that was “not bad

for 2½ hours work”. We think that was fantastic but we bet it took a great deal longer to organise.

Great idea for next Christmas!

Cakes Galore!

There were cakes galore on the

5 February Karen Cook and

friends raised £200 at her 60th

birthday party. The array of

cakes looks mouth-watering!

Many thanks go to Karen and

friends for all the hard work for

The Scleroderma Society. Not

only were you all stars at

fundraising but it looks like you

had a great time too.

Not Forgetting…..

Brigid Hemingway has sent another £250 from concerts in the South Manchester area and

a £20 cheque from a pupil.

Sonya Sinclair in Caithness has collected £60.95 since January this year from sunflower pins and two collection boxes.

Katrina Blythe organised a concert late last year in Sunderland, collecting £68.51.

Bill Wood’s grandson, Stuart, ran in the Liverpool marathon.

Stuart took the place of friend, getting blisters on the soles of his feet as his reward. True dedication to fundraising!

Our Fantastic Fundraisers in Action

A Chance to Support Fundraising Gary Harding is holding a charity fun/golf day (that is, fun for anyone watching him trying to play) on the 31 March at the

Garronds Golf complex in Southend. Visit his page to support his efforts at http://www.justgiving.com/GaryHarding42

http://www.changingfaces.org.uk/Skin-Camouflage

http://www.changingfaces.org.uk/Skin-Camouflage

http://www.justgiving.com/GaryHarding42


We are interested in

identifying

strategies that block the

fibrosis (scarring) seen in

scleroderma. Most of the anti-

scarring drug targets currently

being considered for fibrosis

are involved also with normal

tissue development and

maintenance. We work on the

protein CCN2, which is

specifically expressed in scar

tissue. Thanks to the funding

from the Scleroderma Society,

we have been able to directly

evaluate whether CCN2 is

required for skin fibrosis. We

have used two different

models of scleroderma: one, in

which scleroderma is caused by

application of the drug

bleomycin, the other, in which

scleroderma is caused by the

genetic deletion of a gene

called PTEN. We have shown

that loss of CCN2 causes

resistance to fibrosis in either

model system. We have also

shown that CCN2 is not

required for skin development,

homeostasis or tissue repair.

We therefore think that CCN2

is a good target for antifibrotic

therapy in scleroderma. CCN2

is a member of the CCN family

of matricellular proteins.

Thanks in part to funding from

the Scleroderma Society, we

were able to hold a specialized

meeting in Vancouver, BC,

Canada in September, 2011 to

discuss how strategies aimed at

targeting CCN2 (or the other

members of the CCN family) in

diseases such as scleroderma.

Principal investigators and

trainees came from all over the

world, including Australia,

Japan, Netherlands and the UK.

Neutralizing antibodies and

antisense molecules targeting

CCN2 are currently under

development for fibrotic

disease; the overall consensus

emerged that CCN2 is a good

target for drug intervention

including in scleroderma.

Andrew Leask, PhD

Associate Professor Division of Oral Biology

leaflet on ‘Childhood Onset

Scleroderma’ into Italian. They

are a non-profit association for

patients affected by systemic

sclerosis and their families.

Permission was willingly given

We know from your feedback

that the Society’s leaflets are

well-received and useful to

you. Recently we were

approached by an Italian

systemic sclerosis society for

permission to translate our

and our new Italian friends

have set about the work.

Collaboration is the key in

scleroderma and we are all

working for the same aim to

help people with the condition.

Future Drug Targets for Scleroderma

Our Leaflet on Childhood Onset Scleroderma Translated into Italian

children are responding to

treatment and help aid

decisions about when

treatments can be safely

stopped. Part of the meeting

involved a practical session

within small groups allowing

hands on experience of using

skin scores to assess children

with scleroderma.

I was invited as the UK

representative to a consensus

meeting held during the

symposium to identify minimal

standards of care for children

with scleroderma across

Europe. This was attended by

experts in the field of childhood

scleroderma and included

Paediatric Rheumatologists and

Paediatric Dermatologists. The

outcome of the meeting will be

published in the near future.

Some of the difficulties discussed

at the meeting were the

differences in healthcare

provision across Europe and this

had to be addressed when

agreeing the minimal standards

of care. The aim is to provide a

more uniform approach to

children with scleroderma and

improve the quality of care they

receive.

I would like to thank The Scleroderma Society for awarding me a travel bursary to attend this meeting.

Dr Clare Pain Senior trainee doctor

Paediatric Rheumatology

Hamburg Childhood Scleroderma Symposium and Consensus Meeting December 2011

The Hamburg Scleroderma

Symposium provides an update

on research and clinical

practice in childhood

scleroderma. This annual

meeting is attended by doctors

from across Europe and the

USA.

One of the highlights from the

programme this year was by

Professor Torok from the

University of Pittsburgh in the

USA, regarding a skin score her

group have developed for

measuring how active skin

disease is in children with

localised scleroderma (the

most common form in

children). This skin score can be

used to assess whether


There’s still time to

click on to Just

Giving and help our

marathon runners in

raising funds for the

Society.

Good luck to Jason Burgh who

will spending most of his spare

time in June in the gym cycling

600 miles raising funds for The

Scleroderma Society.

Hope you like the inspirational

picture of Coast to Coast 2011

Professionals and The Scleroderma Society

work together to support our members

The AGM and Annual

Conference of the

Scleroderma Society takes

place on 14 July 2012.

Book a place or arrange a

vote by proxy.


Louise suggested doing a jigsaw

puzzle because it’s absorbing

and relaxing. Having just

popped home at lunchtime to

spend half an hour on a new

1000 piece puzzle, she realised

when the room went dark that

she had been working on it for

9 hours.

Marion Last may have been

more energetic because she

played both badminton and

bowling. Her husband adapted

Liz Holloway reported in 1990

on Steve’s sponsored sail: “The

Yachting Monthly Triangle is a

long-distance short-handed

sailing race from Torquay to

Cork to Brittany and back to

Torquay and takes two weeks.

The race is held every two years

and this year was described as

‘rough and tough’. The boats

left Brittany for the final leg in

Force 7 wind. The whole two

weeks proved exciting and

enjoyable. Steve raised £800.

the racket handle and her son-

in-law made a bowling ball

holder.

Nan Bridgewater began with

recommending walking her far-

from-pedigree chum, especially

as the dog was more persistent

than all her wonderful physios.

Nan, however, takes the prize

as she went on a hot-air

balloon ride, adapted for the

disabled. She said: “The sense

of achievement was amazing”.

Ways to Rest and Play in the 1990s

The Art of Smiling

A smile costs nothing, but gives much.

It takes only a moment, but the memory sometimes lasts forever.

None is so rich or mighty that he can get along without it, and none is so poor but can be made rich by it.

A smile creates happiness in the home, fosters goodwill in business, and is the countersign of friendship.

It brings rest to the weary, cheer to the discouraged, sunshine to the sad, and it’s nature’s best antidote

for trouble.

Yet it cannot be begged, borrowed or stolen, for it is something that is of no value unless it is given away.

Some people are too tired to give you a smile—give them one of yours, for no-one needs a smile so

much as he who has none to give.

Jean Carr, January 1995

Smiles from the 1990s


Steve Holloway in a 38’ cruising yacht,

racing for The Scleroderma Society with

a colleague in 1990.

Use the Society’s

own FaceBook

page to publicise

Wear Your

Gloves to Work

Day.

Cleaning Carpeted Stairs

Equipment:

Sponge, small basin of water, paper bag

Method:

Start at the top. With moistened sponge wipe the stair using a sweeping motion. All the dust and hairs will collect on the sponge or side of stair. Put these in the paper bag, move down a step and repeat the process.

A moistened rubber glove will achieve the same result. Run your gloved fingers over the carpet and the fluff etc. will collect together. Nan, 1990

Helpful Hints for Ladies

Louise, 1991, had a tip “ for ladies only”. She wrote: “Sometimes with scleroderma, as with ageing, the lip line can lose its shape. Continue dusting with powder over the lips and then define the shape of the mouth with a lip pencil (or brush) just OUTSIDE the natural lip line. Use a shade darker than the lipstick you wish to use. Now use lipstick to ‘fill in’ and finish with a lip gloss over the lipstick for extra shine.

Pale, glossy shades will make thin lips better. Also, practice the outline to develop a steady hand.

Layman’s Medical Terms

Artery: The study of fine paintings

Colic: A sheep dog

Coma: A punctuation mark

Fester: Quicker

Morbid: A higher offer

Nitrate: Lower than the day rate

Node: Was aware

Outpatient: A person who has fainted

Post operative: A letter carrier

Secretion: Hiding anything

Urine: Opposite of you’re out

Australian friends 1991

Pam Webster recalls an incident with her grand daughter. “My grandchildren make honest remarks

about my looks. Recently, Suzie had just returned from holiday and was on my lap hugging me and

telling me all about it. She suddenly asked “Why have you got all those ‘scrunchy grunchy’ lines round

your mouth?” I made a comment about getting old but had to smile at her choice of words. She then

said “ Look! They all go when you smile.” So if you see me walking around with a permanent smile on

my face, you’ll know why”. October 1993

No prizes for naming these two smilers.

(It’s Kim Fligelstone and Liz Holloway)


O n 29th June this

year we will be

asking people to Wear their

Gloves to Work for the Day.

For many people with

scleroderma, the idea of

wearing gloves in late June

will not come as a surprise.

Raynaud’s phenomena is

something that affects many

and can lead to you wearing

gloves in the most unusual of

circumstances, whether that

is when shopping, to work or

whether out walking in what

to many would feel like a

warm day. This year, for

World Scleroderma Day, we

want to raise awareness of

this issue and are looking for

as many people as possible

to wear their gloves to work

to raise awareness and

money for the Scleroderma

Society.

Can you help us out?

Getting involved is simple.

We are currently producing a

fundraising pack with lots of

fun ideas to raise money and

awareness on the day. Why

not wear an unusual pair of

gloves to work – if you work

in an office wear a pair of

boxing gloves, gardening

gloves, or what about a pair

of gauntlets?

We are producing

sponsorship forms, posters

and badges for you to use at

any events and we are happy

to help out if you would like

support in getting in contact

with the local newspaper or

radio station.

Wear Your Gloves To Work

Day is a new idea which we

plan to run on an annual

basis to help raise funds and

awareness. Scleroderma is

still very misunderstood as is

the impact it can have

on people’s lives. We

hope that by getting

people to wear gloves to

work on 29th June, we

can start to help people

understand this disease.

It would be great if you

could do your bit to

help. Could you organise an

event, could you publicise

the event at work, do you

know a celebrity who might

sign a pair of gloves that we

could auction? All these

things will help, but of

course, you could just wear

your gloves to work.

If you are interested in

getting involved in Wear

Your Gloves to Work Day

please contact us by email,

telephone, letter, or, if you

have the right gloves, use

semaphore.

Mike Rich, CEO

lengths. I wondered if we

could help her instead. In this

matter, has any member got

contacts with a Portakabin

manufacturer who may be

feeling generous and would

let us have one very cheap?

Perhaps we could start a

Portakabin fund to pay for it. I

feel we owe Dr Black

something as it was her

initiative that started our

Society in the first place”.

Part Two: The Solution

In the Spring 1992 newsletter,

Pam reported on the

resolution to Dame Carol’s

space problem. She wrote: “I

am glad to be able to tell you

about Dr Black’s proposed

Part One: The Lack of Space

In the July 1991 newsletter,

Pam reported on an issue

associated with Dame Carol

Black. At that time, her clinic

at the Royal Free Hospital was

short of space. Pam wrote

that Dame Carol “needs more

room. She would like a

Portakabin outside her office

so that she can spread. To get

this funded by the hospital is

impossible and she proposed

to run a half or whole

marathon and try to get

sponsored. I am sure we could

get lots of people to sponsor

her, but I don’t know about

you but I feel a doctor

shouldn’t have to go to such

Portakabin. Unfortunately,

after all the plans, the hospital

authorities were unable to

allow siting where originally

planned. Then began a long

struggle. As many of you will

know the Rheumatology

department is on the lower

ground floor, so Dr Black tried

instead for permission to

utilize a room or space. There

is finally agreement to

allocate her space near the

reception desk. This will need

refurbishment and we

propose, with kind permission

of those who sent money for

the Portakabin, to use this for

the refurbishment.

Pam xxx 1991 and 2

Put Your Hands Up for Wear Your Gloves to Work Day on 29 June 20112

The Saga of Dame Carol Black’s Portakabin


Put Your Hands Up for

WYGWD on 29 June

Dame Carol Black at the

Society’s 25th anniversary AGM

and conference

Could you organise

an event, could you

publicise the event

at work, or do you

know a celebrity

who might sign a

pair of gloves that

we could auction?


Daphne, Val, Vanessa, Jacky

and Margaret from the East

Anglian group who

met on 11th March

for an informal chat

over a cup of tea at

Jacky’s. As always,

there was plenty to

talk about as we

had not seen each

other since last

September.

Our next meeting will be on

Saturday 26 May at 2.15 for

2.30 at Jacky's (in Felixstowe at

the end of the A14). Depending

on availability, we will either

have a session on Medicines for

Scleroderema from our

pharmacist member or a repeat

of the successful session on

excercises from our retired

physiotherapist member.

We have thought about

meeting further west or

north in the region but as we

now have 6 members in

Ipswich and Felixstowe and a

couple not that far away, we

decided to stay with our regular

venue.

For more information about the Group and our meetings, please contact Jacky on: 01394 286637 or [email protected]

Please note the next meeting is on Saturday May 26th @ 2pm with lunch provided. Please

contact me at [email protected] for more information or telephone 01702 344925 and leave a message. If you're coming for the first time let me know of any dietary requirements.

Amanda Thorpe

good garden centre! There

were 6 of us this time; myself,

Lesley, Steve, Liz, Bill and Janet

and although we didn't have

any new people this time, it

was lovely to catch up with

everyone and hear the latest

news. We managed again to

persuade the helpful staff at

the garden centre to take our

photo! Our next meeting will

The West Sussex Group

met once again at

Findon Garden Centre

on 17th March. We

prefer this venue as it's

quite central to the

area, so it’s convenient

for everyone to attend

and they serve lovely

tea, coffee and cakes as

well as being a very

probably be June/July time,

again at Findon Garden Centre.

Please email or ring myself or

Lesley if you would like to come

or even if you would just like a

chat, some information and

support. You're also very

welcome to just turn up on the

day!

Jo Frowde and Lesley Dodd

East Anglian Group

West Sussex Group

generosity on this occasion, as

well as her much-appreciated

support always given.

The next meeting is on Monday

14th May at 6.30pm in the QA

hospital, Cosham, in the

Education centre, E level. We

are lucky enough to have Dr

Fiona McCrae as our speaker

and her topic will be “The Skin

and Calcinosis.” There should

be plenty of time for questions,

as well as refreshments and

chat. Looking forward to seeing

you.

Liz Holloway

Hampshire Group

On Sunday 18th December,

Steve and I were lucky enough

to be able to join Tracey for her

annual Christmas curry lunch.

This is always such a good

occasion and as usual we

thoroughly emjoyed the

afternoon in The Blue Cobra,

Portsmouth. Tracey treated us

to a delicious meal and at the

end, we were all asked to make

a donation to The Scleroderma

Society. This event is in

memory of Tracey’s father who

had scleroderma. I’m very

pleased to report that just over

£152 was raised. I would like to

thank Tracey very much for her


The West Sussex Group catching up in March

From left to right, Daphne, Val,

Vanessa, Jacky and Margaret from

the East Anglian group

HELP NEEDED TO LEAD

HANTS GROUP

This will be the last local

group meeting we will be

organising. After 12 years

or so, we feel it is time to

step back and let someone

young take over! If

anyone, living anywhere in

Hampshire, feels even a

small amount of interest,

please call or email Liz to

discuss. We have enjoyed

our time coordinating this

group, latterly with

immense help and support

from the Rheumatology

team at QA. Many thanks

Liz and Steve Holloway

Essex, London and Kent Group

Royal Free Support Group

The Royal Free London Support

Group met on 17th February.

12 people attended and Ruth

Westwood, a dietician, gave

advice on nutrition. She spoke

about the importance of a good

diet, complications faced by

scleroderma patients and how

to overcome them.

The next meeting will be on the

27th July 2012 in the

Rheumatology Library on the

lower ground floor. Call 0207

8302326 for more information.

Kim Fligelstone,

Chair

Used British and foreign stamps

can be donated to raise funds,

and Alison McGlashan kindly

continues to collect these for

us. Please send any you have to

Alison at 10,Bothlyn Avenue,

Kirkintilloch, G66 3DU.

mailto:[email protected]




Aintree University Hospital Jan Lamb 0151 525 5980 bleep 2231

Bath Royal National Hospital for Rheumatic Diseases Sue Brown 01225 428823

Belfast Ulster Hospital Audrey Hamilton 02890 561310

Dundee Ninewells Hospital Steve McSwiggan 01382 633957

Leeds Chapel Allerton Hospital Elizabeth Tyas 0113 3923035

London - Royal Free Hospital Scleroderma queries: 020 783 02326 Pulmonary hypertension queries: 020 7472 6354

London -Royal Brompton Hospital Respiratory (lung) queries: Lucy Pigram 07758 8943 175

Manchester Hope Hospital Liz Wragg and Catherine Lambe 0161 206 0192

Newcastle Freeman Hospital Scleroderma queries: Karen Walker 0191 223 1503 Pulmonary hypertension queries: Rachael Crackett / Julia De-Spyza 0191 213 7418

Portsmouth Queen Alexandra Hospital Paula White / Julie Ingold 02392 286935

Local group contact detailsLocal group contact detailsLocal group contact details

Buckinghamshire & Hertfordshire

Marilyn York

Tel: 077 0259 2387

[email protected]

Derbyshire, South Yorkshire, Staffordshire & Cheshire Diana Twigg 01298 24539 [email protected]

East Anglia Jacky March 01394 286637

[email protected]

East Sussex Rosanna Clifton [email protected] 01424 426738

Trustees Kim Fligelstone (chair) 6 Portishead House Westbourne Park Road London W2 5UP 020 7229 4750 [email protected]

Steve Holloway (secretary) [email protected]

020 7000 1925

Richard Dodds [email protected]

Susie Hoare [email protected]

Helena Rozga [email protected]

Chief Executive Mike Rich [email protected] 020 7000 1925

Fundraising Louise Cecil Flora Cottage, 27 The Square Potten End, Near Berkhamstead Hertfordshire HP4 2QT 01442 879129 [email protected]

Christmas Cards Celia and David Graham The Scleroderma Society PO BOX 581 Chichester PO19 9EW 020 7000 1925 [email protected]

Office The Scleroderma Society PO BOX 581 CHICHESTER PO19 9EW 020 7000 1925 [email protected]

Cynthia Leslie (newsletter)

[email protected]

Calendar of Events Julian & Dom Becher 18 Helena Close Portslade Brighton, BN41 2DQ 01273 415517 [email protected]

Helpline The Scleroderma Society operates a free helpline. We cannot offer medical advice, but if you feel you need someone to talk to we can be a good listening ear and will help in any way we can, 09:00-21:00 every day. Tel: 0800 311 2756. Calls are free from UK landlines.

Carer Support Group For more information on the Carers’ support group contact Michael Thorpe. 01702 344 925 [email protected]

Nurse Specialist Advice Lines These nurse-led advice lines are for general inquiries only, not emergencies. If the nurse is unavailable, you may need to leave a message so he/she can call you back. Some of these Nurse Specialist Advice Lines are part-funded by the Raynaud’s and Scleroderma Association

Contact Details East Yorkshire Lynn Hind 01482 354312 [email protected]

Essex, Kent and London Amanda Thorpe 01702 344925 [email protected]

Hampshire Liz and Steve Holloway 01243 539466 [email protected]

Lancashire and West Yorkshire Sheila Procter 01282 429004 [email protected]

Merseyside Helen Lingwood 0151 2222764 [email protected]

East Midlands Cheryl Darch Tel: 0116 2717180 [email protected]

North Wales Kate A Owen 01492 515834

Oxfordshire & Berkshire Melanie Bowen 01865 515067 [email protected]

Powys & Mid Wales Jennifer Ames Tel: 01544 267988

Scotland Frances Bain 0131 477 1122

South London Celia Bhinda Tel: 020 8698 6294 [email protected]

South Wales Belinda Thomson 02920 612690 [email protected]

Surrey Nicky O’Shea 01483 764524

[email protected]

West Sussex Joint contacts: Jo Frowde & Lesley Dodd Jo: 01403 741445 or 07922274167 [email protected]

Lesley: 01903 753971 [email protected]

Wiltshire and North Hampshire Lynn Morton 01980 863444 [email protected]

Disclaimer: The Scleroderma Society does not endorse

any drug, treatment or opinions reported within this

newsletter. You should always consult your doctor first

for personal advice on any medical matter.

























In January, I was asked if I

would be a patient for medical

students from Oxford

University as part of their

exam finals. I willingly agreed.

Taken by taxi to the hospital, I

joined the rest of the patients,

helpers and examiners. After a

very nice breakfast, we were

installed in our examination

rooms and a bell announced

the arrival of the first student.

Altogether, 55 students

examined me, mostly young

women who seemed quite

nervous. They were asked to

examine my hands and face,

and were given 4 ½ minutes to

make a diagnosis.

I have small digital ulcers on 4

fingers, plus remnants of

previous ulcers, and

telangiectasia. The students

asked if I ever got cold hands,

whether they changed colour,

and how often it happened.

When asked by the examiner

what these symptoms might

indicate, the majority

suggested scleroderma. Some,

when asked which organs

could be involved, mentioned

kidneys, lungs, heart and

oesophagus.

After a good lunch, the

afternoon session began. This

proved even more successful,

despite one very uncertain

student who diagnosed

Scabies. The examiner was not

impressed!

All the students were polite,

washing their hands before

asking permission to examine

me, and making sure they

were not causing any pain.

The day ended at 5.30 and

after tea and biscuits, we

headed home, weary but

overwhelmed with the success

of the day and the fact that so

many students had an

awareness of Raynaud’s and

scleroderma.

Melanie Bowen

An Inspiring Day at the John Radcliffe.

distribution by post and by

email, and all the record

keeping and tracking required

to process Gift Aid. Over the

years the database has been

extended to enable us to keep

track of donations from

members and non-members,

to produce personalised thank

you letters when donations

are received, and to manage

our Member Contact Scheme.

It is also used to provide

routine management

information to the trustees.

It became clear in recent years

however, that as our

membership activities

increased, and as the

membership database became

more and more important as a

tool to manage these

activities, we needed to move

from our “home made”

system and invest in a

commercially available and

properly supported database –

not dependent on the IT skills

of the membership secretary!

We are now in the process of

integrating the database with

our website to enable

members to access their own

membership record and keep

it up to date, and we expect to

launch this development in the

next 3 months.

We have always taken the

security of our data very

seriously, and the society is a

registered data user under the

terms of The Data Protection

Act. We will not share the

information we hold with any

other organisation, and we will

only distribute contact

information between

members who have signed up

for our Member Contact

Scheme. If you would like to

know what information we

hold about you, please either

send me an email

[email protected]

or write to me at PO Box 581,

Chichester, PO19 9EW.

Steve Holloway

Membership Secretary

Our new Membership Database

Work has been going on

during the past six months to

transfer our membership

database to a new internet

based system. The new

membership database is now

fully operational and in daily

use, and we are already seeing

the benefits. The Scleroderma

Society started to use a

computer database to record

membership details many

years ago. When I became

membership secretary in

2005, I was pleased to find

that basic contact information

about members was already

held on a computer. Since

then, as membership numbers

grew, it became necessary to

develop a very comprehensive

membership database which

not only recorded members’

contact details, but also

automated other important

membership activities such as

keeping track of and

reminding members of their

renewal date, newsletter


Melanie Bowen

We have always

taken the security of

our data very

seriously, and we

will not share the

information we hold

with any other

organisation.

Next newsletter deadline is 3 July

Article on page 11


Miss L Allason-Jones

M Anderson

Susan Armstrong

Vicky Arnold

Mr R Bain

Mr & Mrs B Bird

Mr. Alan Brain

Mrs Isobel Burks

Mrs. AE Burt

Jean Campbell

Ms Grace Chen

Mrs. Rosa Lucia Cole

Karen Cook

Anthony Coombs-Humphreys

Mrs HC Craig

Mrs D Davies

Mrs Jane Davies

Dr Lois Drawmer

Mrs T Ellis

Mr HL Evans

Ms Kim Fligelstone

Mrs C Garratt

Patricia Gilbert

Mrs K Glynn

Mrs. Ann Hall

Mr D Hollamby

June Holmes

Mr. Matthew Hooper

Mrs LR Hunt

Shamim Hussain

Mrs. Tracey James

Tina Jones

Mr R Jones

Mrs. Carol Kindon

EM Lilly

Mr C Martin

Mrs Linda McDonald

Mr Paul Moss

Emma Norris

Mrs VS Norwood

Mr S Pallett

Tracey Phommavanh

Mr M Pilcher

Mrs K Pilkington

Diana Pringle

Mr. Steve Pullman

Phil Pyatt

Mrs J Ramsahai

Mrs RLM Roberts

Mrs H Ross

Mr P Rowlands

Miss Yvette Saggers

Mr & Mrs Roy Sanders

Sue Simpson

Sonya Sinclair

Mrs Freda Spain

Mr & Mrs J Stephenson

Mrs Linda Stewart

Mrs. Valerie Storey

Mrs Patricia L Taylor

Mrs Jan Temlett

Mrs. Carol Todd

Mrs. Joan Turner

Catherine E Upton

Michael Vidler

Mrs. Julie Watson

Ted & Robyn Watts

Mrs N Weal

Mrs Helen Webb

Mr Bill Woods

Jenny Yates

a reminder letter, either in the

post or by email. By the time

you read this, many of those

payments will have been

received. Thank you.

If you have not received a

letter or email reminder, then

you have nothing to do! Your

304 members are due to renew

their membership of The

Scleroderma Society on 1st

April. Many members renew by

Bank Standing Order and we

don’t send reminders. If you

usually pay by cheque or by

using our online payment

facility, you will have received

subscription is not due this

year. To save money, we don’t

usually send receipts for

renewals. If you would like a

receipt, please let me know.

Thank you for your continued

support for The Scleroderma

Society. Steve Holloway

Thank You!

2012 Subscription Renewals


Between 17th December 2011 and 10th March 2012 we received £22,326 in donations, Gift Aid and

Give As You Earn. This is a wonderful amount and our grateful thanks go to all those kind and

generous people and organisations who contributed. This includes sponsorship from the friends and

supporters of all those who have set up fundraising pages on the JustGiving and Virgin Money Giving

websites. If we have missed your name from the list we apologise.

Scleroderma News

In the next newsletter:

Success of WYGWD Marathon reports Health advice and much more…

Scleroderma News

Now you know: Your Society is in the hands of a new CEO (p1) How to exercise your fingers (p3)

Smiling is good for you (p6) How to help WYGWD (p7) Your data is safe with us (p10)

The next EULAR Annual

European Congress of

Rheumatology will take place

from 6-9 June 2012 in Berlin,

providing a unique event for

the exchange of scientific and

clinical information. It will be a

platform to facilitate

interactions between patients,

medical doctors, scientists,

health professionals and

professionals representing the

pharmaceutical industry both

from within Europe and from

around the world. In addition,

EULAR 2012 will again

welcome delegates from the

Paediatric Rheumatology

European Society (PReS) to a

Joint Congress. Eular will also

continue the initiative of closer

cooperation with primary care

physicians and professionals - a

commitment started in London

in 2011. For more information

visit the Eular website at

www.eular.org

The Scleroderma Society

newsletter will report back to

you after the Berlin Congress.

eular 2012: The European League Against Rheumatism.

A big PLEASE send in photos of all your events! Everyone loves to see you in action. Send them to the office at: [email protected]

A big thank you to Liz and

Steve Holloway, retiring from

the Hants Group, for running

it so successfully.


your family has their own FaceBook page.

We are finalising a pack of information explaining how easy it is to get involved and we’ve written to a range of celebrities and companies across the UK asking for their support. Members have also been volunteering to talk to the media about their experiences, which will be a great help in trying to explain the complexity of scleroderma and its very real effects on day to day life.

As explained in the last newsletter, the idea is to get people to pay a small amount of money to wear

Work is progressing on our major awareness raising campaign, encouraging people to wear their gloves in summer as they go about their daily lives – at work or school or going to the corner shop for a pint of milk.

Love it or hate it, social media such as FaceBook are probably going to be very important in helping us get support for this campaign – especially from our friends and friends of friends! We are going to be using the Society’s own FaceBook page to publicise Wear Your Gloves to Work Day and hope that you will help us by ‘liking’ us if you or anyone in

their gloves to work, school, going to the shops, down the pub – wherever they go - on 29 June. This would help us not only raise money but also awareness on World Scleroderma Day.

By drawing attention to one of the symptoms of scleroderma in this simple ‘light hearted’ way, we hope to be able to raise awareness more generally about scleroderma.

If you would like more

information about taking

part or talking to the media

please email

[email protected]

Wear Your Gloves to Work Day is on 29 June 2012

30th AGM and Conference 14 July 1012

Want to know how to get

involved in WYGWD? Get your

information pack by contacting

our office at

[email protected]

or call us on 020 7000 1925

Has your bladder been

affected by scleroderma? If

so, would you be happy to

talk about your experience

with another member?

If you can help contact Kim

on 0207229 4750 or

[email protected]

Help line requests

Diary Dates for 2012 Reliable Books about Scleroderma

Order through your local book shop and are

available through www.amazon.co.uk in the UK, www.amazon .com in the USA

The Scleroderma Book

By Maureen Mayes, M.D., M.P.H.

ISBN 0-19-516940-9

A comprehensive guide to the disease written especially for patients and their families

Voices of Scleroderma Volumes 1 - 3, by ISN

Three volumes of stories from around the world

Scleroderma - The Inside Story

By Anne H Mawdsley MBE

ISBN 0-9538297-15

The Best of the Beacon

Edited by Marie Coyle

A marvellous collection of articles

Scleroderma Coping Strategies

By B. Bianca Podesta

ISBN 978-1-936401-18-5

Available from www.sclerodermacoping.com

Brighton Marathon 15 April

London Marathon 22 April

Hampshire Group 14 May

East Anglia Group and Essex,

London and Kent Group 26 May

World scleroderma day and Wear

Your Gloves to Work Day 29 June

30th AGM/Conference 29 June

Royal Free Group 27 July

Olympic Games 17 July - 12 August

Paralympic Games 29 August

- 9 Sept

You can raise money for the

Scleroderma Society online at

www sclerodermasociety.co.uk


Spring Newsletter 2012

Documents

Spring Newsletter 2012