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© Scleroderma Society 2012 Society and the work it does. I am sll 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 mes for us all and money is increasingly hard to find. However, the Society is in a strong posion to go from strength to strength. Charies and the recession These are difficult mes for all charies but they have been especially fraught for smaller organisaons. This is also a me of opportunity for smaller charies like ours. Developments in new technology and the expansion of social media have made it possible for smaller organisaons to have an influence far beyond their size. Today it is possible to distribute informaon, 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 organisaon was leſt a legacy which the Trustees decided should be used to move the Society forward to develop more and beer 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 Execuve. We have now taken this step and appointed Mike Rich. We asked him some quesons 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 charies and others in the sector. For the last decade I have worked for health charies. I was the Chief Execuve for the maternity charity Acon on Pre- eclampsia and then for the Blood Pressure Associaon. Professional achievements When I was at Acon on Pre- eclampsia, I worked with obstetricians and midwives to develop treatment guidelines which have made a real, posive difference to the experiences of pregnant women. At the Blood Pressure Associaon we introduced a community outreach programme to deliver heart health checks to people oſten excluded from mainstream healthcare. It is important that charies do not lose sight of the fact that they are dealing with, first and foremost, individuals. Relaxaon & leisure interests I am married and have four children aged between 18 and 5, so family acvies (running them around!) take up a lot of my me. 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 rere 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
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  • 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 childrens

    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

    Firefighters 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

  • Scleroderma Society 2012

    I love spring, and autumn for

    that matter. Summer I spend

    worrying about the heat and

    winter about the cold, so its

    spring and autumn when I can

    relax, enjoy the weather and be

    grateful I live in a country with

    a mild climate.

    Its not just the weather Im

    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

    Societys 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

    laymans 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.

  • Scleroderma Society 2012

    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. Raynauds affects hand function and needs to be

    controlled as much as possible.

    What is Raynauds and what are its treatments?

    Raynauds 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 Societys 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 doesnt work for you.

    Page 3 Scleroderma Society: Spring 2012

    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 Societys

    leaflet The Fingers in

    Systemic Sclerosis at

    ww.sclerodermasociety.co.uk

    or contact the office on

    020 7000 1925

  • Scleroderma Society 2012

    T he long months of dark and cold winter training have drawn to a close for the

    Societys 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!!!

    Theyll all don the blue Society

    running vests to raise as much

    awareness as possible, and we

    hope theyll all wave madly at

    the TV cameras! Lets 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

    Page 4 Scleroderma Society: Spring 2012

    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 2 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 Woods 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

  • Scleroderma Society 2012

    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 Societys 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

    Page 5 Scleroderma Society: Spring 2012

    Theres 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.

  • Scleroderma Society 2012

    Louise suggested doing a jigsaw

    puzzle because its 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 Steves 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 its natures 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 smilegive 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

    Page 6 Scleroderma Society: Spring 2012

    Steve Holloway in a 38 cruising yacht,

    racing for The Scleroderma Society with

    a colleague in 1990.

    Use the Societys

    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.

    Laymans 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 youre 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, youll know why. October 1993

    No prizes for naming these two smilers.

    (Its Kim Fligelstone and Liz Holloway)

  • Scleroderma Society 2012

    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.

    Raynauds 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 peoples 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 Carols

    space problem. She wrote: I

    am glad to be able to tell you

    about Dr Blacks 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 dont know about

    you but I feel a doctor

    shouldnt 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 Blacks Portakabin

    Page 7 Scleroderma Society: Spring 2012

    Put Your Hands Up for

    WYGWD on 29 June

    Dame Carol Black at the

    Societys 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?

  • Scleroderma Society 2012

    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

    Jackys. 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 jacky@sclerodermasociety.co.uk

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

    contact me at dollydumpling23@gmail.com 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 its 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 Traceys father who

    had scleroderma. Im very

    pleased to report that just over

    152 was raised. I would like to

    thank Tracey very much for her

    Page 8 Scleroderma Society: Spring 2012

    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.

  • Scleroderma Society 2012

    Page 9 Scleroderma Society: Spring 2012

    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

    andrewandmarilyn@btinternet.com

    Derbyshire, South Yorkshire, Staffordshire & Cheshire Diana Twigg 01298 24539 diana@sclerodermasociety.co.uk

    East Anglia Jacky March 01394 286637

    jacky@sclerodermasociety.co.uk

    East Sussex Rosanna Clifton rosanna@sclerodermasociety.co.uk 01424 426738

    Trustees Kim Fligelstone (chair) 6 Portishead House Westbourne Park Road London W2 5UP 020 7229 4750 kim@sclerodermasociety.co.uk

    Steve Holloway (secretary) steve@sclerodermasociety.co.uk 020 7000 1925

    Richard Dodds Richard@sclerodermasociety.co.uk

    Susie Hoare susie@sclerodermasociety.co.uk

    Helena Rozga Helena@sclerodermasociety.co.uk

    Chief Executive Mike Rich mike@sclerodermasociety.co.uk 020 7000 1925

    Fundraising Louise Cecil Flora Cottage, 27 The Square Potten End, Near Berkhamstead Hertfordshire HP4 2QT 01442 879129 fundraising@sclerodermasociety.co.uk

    Christmas Cards Celia and David Graham The Scleroderma Society PO BOX 581 Chichester PO19 9EW 020 7000 1925 cards@sclerodermasociety.co.uk

    Office The Scleroderma Society PO BOX 581 CHICHESTER PO19 9EW 020 7000 1925 info@sclerodermasociety.co.uk

    Cynthia Leslie (newsletter)

    cynthia@sclerodermasociety.co.uk

    Calendar of Events Julian & Dom Becher 18 Helena Close Portslade Brighton, BN41 2DQ 01273 415517 calendar@sclerodermasociety.co.uk

    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 michael@sclerodermasociety.co.uk

    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 Raynauds and Scleroderma Association

    Contact Details East Yorkshire Lynn Hind 01482 354312 lynn.hind@hotmail.co.uk

    Essex, Kent and London Amanda Thorpe 01702 344925 dollydumpling23@gmail.com

    Hampshire Liz and Steve Holloway 01243 539466 liz@sclerodermasociety.co.uk

    Lancashire and West Yorkshire Sheila Procter 01282 429004 sheila@sclerodermasociety.co.uk

    Merseyside Helen Lingwood 0151 2222764 Helen@sclerodermasociety.co.uk

    East Midlands Cheryl Darch Tel: 0116 2717180 cheryl@sclerodermasociety.co.uk

    North Wales Kate A Owen 01492 515834

    Oxfordshire & Berkshire Melanie Bowen 01865 515067 melanie@sclerodermasociety.co.uk

    Powys & Mid Wales Jennifer Ames Tel: 01544 267988

    Scotland Frances Bain 0131 477 1122

    South London Celia Bhinda Tel: 020 8698 6294 celia@sclerodermasociety.co.uk

    South Wales Belinda Thomson 02920 612690 belinda@sclerodermasociety.co.uk

    Surrey Nicky OShea 01483 764524

    nicky.oshea@live.co.uk

    West Sussex Joint contacts: Jo Frowde & Lesley Dodd Jo: 01403 741445 or 07922274167 jo@sclerodermasociety.co.uk

    Lesley: 01903 753971 lesley@sclerodermasociety.co.uk

    Wiltshire and North Hampshire Lynn Morton 01980 863444 lynnm@sclerodermasociety.co.uk

    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.

  • Scleroderma Society 2012

    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 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 Raynauds 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

    steve@sclerodermasociety.co.uk

    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

    Page 10 Scleroderma Society: Spring 2012

    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

  • Scleroderma Society 2012

    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

    dont 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 dont

    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

    Page 11 Scleroderma Society: Spring 2012

    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: info@sclerodermasociety.co.uk

    A big thank you to Liz and

    Steve Holloway, retiring from

    the Hants Group, for running

    it so successfully.

  • Scleroderma Society 2012

    your family has their own FaceBook page.

    We are finalising a pack of information explaining how easy it is to get involved and weve 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 Societys 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

    info@sclerodermasociety.co.uk

    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

    info@sclerodermasociety.co.uk

    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

    kim@sclerodermasociety.co.uk

    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