Stakeholder Information — Irish Raynaud's and Scleroderma Society - medical professional home

By: Irish Raynaud's  05/12/2011
Keywords: Medical Professionals, Scleroderma Society, Systemic Sclerosis,

Research Updates

ISN Profile Update—Dr. James R. Seibold

In February 2010, Dr. James R. Seibold, who is the Chair of our ISN Medical Advisory Board, became Professor and Chief of the Division of Rheumatology at the University of Connecticut Health Center. He had been on the faculty of UMDNJ from 1980-2004 where he had served as Chief of the Division of Rheumatology, Director of the Clinical Research Center and as the W.H. Conzen Chair of Clinical Pharmacology.  In July 2004, he became Professor and Director of the University of Michigan Scleroderma Program, and in February 2010 he joined UCHC. For appointment inquiries with Dr. Seibold, please call 1-860-679-3605.  Progress through Collaboration in Scleroderma by James R. Seibold, M.D., ISN Medical Advisory Board Chair Dr. James R. Seibold James R. Seibold, M.D. Chair, ISN Medical Advisory Board

The Pace of Research in Ssc

The pace of research in scleroderma is accelerating and the quality of data is ever increasing. As a 30-year veteran of scleroderma research, I have watched in awe as the field advances and have tried to “diagnose” the reasons. I think it’s the spirit of collaboration and it all traces back to the U.S. study of D-penicillamine. Uncontrolled case series from the 1970s and early ‘80s had suggested this agent had benefits, but reliable data from a controlled trial were lacking.  Several attempts to get funding from the National Institute of Health had been unsuccessful largely because the evidence was so weak. A group of committed U.S. clinical researchers decided to do a study anyway, and organized a trial with minimal funding but maximal passion.


While the trial was quite negative, it did demonstrate that we could all pull together in an effective fashion. The success led to formation of the Scleroderma Clinical Trials Consortium and later to EUSTAR, the EULAR Scleroderma Trials and Research Group. International collaboration grew rapidly, nourished by the understanding by study sponsors that trials were needed and that they could be done with quality and efficacy.

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.

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

Booklet for GPs

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.

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

Keywords: Medical Professionals, Scleroderma Society, Systemic Sclerosis,

Other products and services from Irish Raynaud's


Products — Irish Raynaud's and Scleroderma Society

Developed especially for Raynaud's sufferers, HeatBands offer a natural remedy for cold hands, suitable for young and old. They have become popular with golfers, sailors, runners, riders and many others who prefer not to have cold hands.


Stakeholder Information — Irish Raynaud's and Scleroderma Society - patient home

Wear insulated gloves* Stop smoking* Wear gloves when taking food from freezer cabinets* Stop hanging up laundry* Stop using cold water to wash vegetables/clothes* Wear thick-soled shoes and heavy socks* Wear hats/gloves/wrist-warmers. Your GP, pharmacist, friends, colleagues, and family will all be supportive, but you are the one who has to put on gloves, buy handwarmers, and refuse invitations to football matches.


Stakeholder Information — Irish Raynaud's and Scleroderma Society - carers home

If you are caring for someone with Scleroderma, or for someone with Raynaud’s, you need to know first of all that these conditions affect a lot of different body systems. The person you are caring for may have symptoms that they have not told their doctor about, and you should be alert to a variety of problems that may occur.