Scleroderma Victoria

Scleroderma Victoria Inc began in 1979 to support people who live with Systemic Sclerosis. Our mission is to: • provide support to those living with Scleroderma, their families, carers and friends; • promote community awareness of Scleroderma; • support research into better treatments for all people with this chronic illness. Scleroderma Victoria is run by a Committee of volunteers whom assist our members by: • publishing a member newsletter; • growing a network of support groups located throughout Melbourne and regional Victoria; • funding and organising education, awareness and fundraising events; • supporting specialists and medical practitioners in managing this chronic illness. What is Scleroderma? Scleroderma is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. It currently is not known how each individual gets it, how it manifests itself in different forms and differently for each individual, nor is there a cure. It can be mild to severe to the point of life-threatening and severely impacts on the health, lifestyle and lifespan of those afflicted. The disease can take several forms, such as: * Pain and stiffness of joints; * Swelling and puffiness of the hands; * Skin disorders such as thickening, ulcerations, calcinosis, telangiectasia, dryness and itchiness; * Digestive and gastrointestinal tract problems; * Dry eyes and dry mouth (Sjogren’s Syndrome); * Oral, facial and dental problems (tightening of skin and decreased mouth opening); * Kidney involvement; * Lung Involvement (Interstatial Lung Disease); * Pulmonary Arterial Hypertension; * Heart problems inclusive of arrhythmias, pericardial effusion, and heart failure; * Non-specific symptoms – fatigue, generalised weakness, aching of muscles and joints. It is estimated there are over 5000 people with Scleroderma in Australia and approximately 3-4 times more women than men develop the disease.