FIRST NATIONAL SCLERODERMA AWARENESS WEEK (MARCH 17-25)
Patients with the rare but potentially serious immune disorder, scleroderma, will have their voices heard with the launch of Scleroderma Australia’s first National Scleroderma Awareness Week, March 17-25.
Scleroderma is a rare, chronic, often progressive, autoimmune disease in which the body’s immune system attacks its own body.
Scleroderma literally means “hard skin” – with thickening of the skin being the most obvious symptom of a multi-system disease that can affect most organs of the body.
Professor Ronald Penny, Emeritus Professor of Medicine, University of NSW and Medical Director of Good Health Solutions has spent the last 30 years working in the area of research and clinical care for scleroderma and is the newly appointed Patron of Scleroderma Australia.
Professor Penny said today that Scleroderma Awareness Week was an important initiative as scleroderma could be managed more effectively, if diagnosed early.
“In addition to awareness, a key focus of Scleroderma Australia is to promote research and development of more effective treatments,” Professor Penny said. “This disease can be extremely debilitating variably affecting as it does skin, blood vessels, joints, tendons, gastrointestinal tract, lungs and heart and kidneys.
“Over the last 30 years, treatment has come a long way and we now have very effective targeted treatments for different components of the disease. However, there is still a long way to go to find a cure for scleroderma.”
To raise awareness about the condition Scleroderma Australia has developed a sunflower icon.
The sunflower is symbolic, as like the sunflower which turns towards the sun for warmth, people with scleroderma generally prefer warmer weather. During much of winter patients can often be forced to stay at home in heated rooms most of the time, some even avoiding going to the supermarket all year round because of the exposure to cold.
www.sclerodermaaustralia.com.au.
