Irish Raynaud's & Scleroderma Society

Conferences and Events

The 8th National Health Summit

Redesigning Ireland’s Health Services

Thursday, February 16th 2012 Croke Park, Dublin http://www.eventznet.com/evx/acs/iquest/healthsummit12/

International Conference on Integrative Medicine

The conference will take place in Jerusalem on May 13-15, 2012
And will focus on integrating Conventional and Alternative Medicine in all fields.

Register Now and Secure a Spot!

For further information visit the conference website at:
http://www.mediconvention.con

 MedicReS

World Congress on “GOOD MEDICAL RESEARCH”

Hofburg Palace, Vienna, Austria, June 2-9 2012 http://www.ic2012.medicres.org/?islem=5&list=26

Information for Medical Professionals

Very Early Diagnosis of Systemic Sclerosis (VEDOSS)

Scleroderma (Systemic Sclerosis) can be treated early only if diagnosed early. The VEDOSS programme, led by EUSTAR, calls for all GPs to refer people with two early symptoms to a rheumatologist for further investigation. While Raynaud’s (lack of circulation in the fingers and toes when chilled, leading to white, numb digits) is a common, mild condition, it may prove to be the precursor of systemic scleroderma, and it is one of the symptoms that call for surveillance. A second symptom is hard puffy fingers. Where both symptoms are present, an ANA blood test should be conducted. Examination by a rheumatologist familiar with systemic sclerosis is the next step. Early diagnosis of scleroderma saves lives and leads to control of the disease.

“The challenge of early systemic sclerosis for the EULAR Scleroderma Trial and Research group (EULAR) community.  It is time to cut the Gordian knot and develop a prevention or rescue strategy”  This is the title of an article in the Annals of Rheumatic Diseases 2009.  Click here to read it, or download it from the link at the bottom of the page.

Scleroderma Awareness Day

On June 29 2009, in addition to launching VEDOSS, we celebrated the life and death of Paul Klee and all those who struggle with scleroderma. We continue to campaign for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases are not forgotten, but afforded the consideration and attention of other more common diseases.

Information Leaflets

If you need information leaflets to hand out to patients you can order them by phone (01 2020184) or email.  Leaflets are also available through INFORM.

Booklet for GPs

We have prepared a booklet for GPs with information on diagnosis and treatment of Raynaud’s amd scleroderma.  Click on GPs booklet link below - see under DOCUMENT DOWNLOADS.  If you would like a hard copy of this book please email us with your name and postal address and we will send it to you.

Cost of Management of Ssc

The cost of the management of systemic sclerosis (SSc) increases enormously with the increase of disease duration and the damage that the disease causes to cutaneous, cardiovascular, pulmonary, and GI systems. Indeed, the goal of treatment is now to block disease evolution, maintain quality of life, and prevent organ damage. Therefore, early diagnosis is mandatory to achieve these tasks. Unfortunately, late diagnosis of SSc allows, in the majority of cases, development and spread of organ damage leading eventually to functional failure.

Early Treatment of Ssc

Early SSc has recently become the main target of care and treatment. Recognition of the disease through its early symptoms is therefore of paramount importance in order to reach an early diagnosis and to fight the disease appropriately. Raynaud’s (RP) is the earliest sign of SSc suggesting an underlying endothelial and microvascular dysfunction. RP can precede disease onset and development by several months to years. Therefore, a program designed to increase awareness and further investigation of RP by primary care physicians is essential. The identification of early microvascular changes is today possible through the recognition of nailfold capillaroscopic patterns. In addition, autoantibodies (ANA, anti centromere, anti topoisomerase I) are very helpful hematological signs, as they are already present in the earliest pre-sclerodermatous phase.
Thus, in presence of RP, a careful clinical assessment together with the presence of an altered capillaroscopic pattern and positive antibody results may allow for a diagnosis of very early SSc.

Click here to read “VEDOSS unrolling” or download this document from the link at the bottom of the page.  If you cannot see the list of documents for downloading you will need to register with the website.  This is free and takes only a few minutes.

The objectives of the VEDOSS programme

• To track SSc through identification of patients with Raynaud’s.

• To develop regional networks to disseminate and implement the awareness of systemic sclerosis and its early diagnosis and classification in Europe.

• To develop clinics devoted to Raynaud’s in order to detect SSc early.

• To develop information systems to facilitate and support the early diagnosis and treatment of the disease.

• To develop postgraduate education programmes to support the above objectives