Irish Raynaud's & Scleroderma Society

Scleroderma

You can contact us by telephone at 01 2020184 or email

Information leaflets for patients you can be ordered by phone or email.  We have patient leaflets on Raynaud’s, Scleroderma, Raynaud’s in the Young, Digestion and Nutririon in Scleroderma and The Lungs in Scleroderma.  These and others are available free of charge.

With the help of Prof. Dame Carol Black we have prepared an information booklet for GPs with information on diagnosis and treatment of Raynaud’s and scleroderma.  See also below, under Document Downloads, GP booklet.

The VEDOSS (Very Early Diagnosis of Systemic Sclerosis) programme was launched by Minister for Health Mary Harney in the Atrium at Trinity College Dublin at 6pm on the 29th June. 2009.

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. Download it from the Editorial/Vedoss link at the bottom of the page.  To access this you must first register with the website.  This is free to do and takes just a few minutes.  Or you can email us for a hard copy.

So Rare Card

A postcard sized card showing fingers suffering a Raynaud’s attack on one side and a list of three early symptoms of scleroderma on the other side.  These symptoms are SOre puffy fingers, RAynaud’s and REflux.  These cards are available from the office and can be ordered by telephone or email.

Resource Link

The Scleroderma Foundation website provides information for medical professionals with textbooks, image atlases and information on research.