By Marilyn Singer

World Scleroderma Day, held around the world on 29 June, has proven to be a wonderful way to celebrate and remember all those that live with Scleroderma on a daily basis; and those that have not been so lucky in their Scleroderma journey. It has become a day to educate, support and raise awareness. Research and treatment for Scleroderma has certainly come a long way, and now so much more is known about the disease and ways to make the lives of those living with Scleroderma better. This has largely been brought about by raising awareness, better advocacy and of course raising funds for research. The Scleroderma Community in Australia has played a major part in this success. 

Scleroderma NSW is actively involved in fundraising, supporting members, providing information and reaching out to people when they may be most vulnerable. Our recent World Scleroderma Day Seminar was a great success; members, families and supportive friends attended this informative event, on a cold winter’s day in Sydney. Our attendees were extremely pleased with the topics, provided by our Guest Speakers. 

Dr Victoria Johnson, Rheumatologist, gave an overview of Scleroderma and outlined the wonderful work that is being done at The Liverpool  Scleroderma Multidisciplinary Clinic, which Scleroderma NSW is proud to support. 

Dr Lucinda Roper, Medical doctor, seeking to specialise in Scleroderma, and Christabelle Elbitar, Pharmacist, PhD Candidate, shared their knowledge and gave our members an overview of the research they are planning with the Scleroderma Community directly involved in providing better outcomes for daily living with Scleroderma and gathering patient feedback. Scleroderma Australia, Victoria, Queensland and New South Wales are all supporting this project. 

Our day finished with practical advice from a Senior Dietitian from St. Vincent’s Hospital Sydney, Jessica Cheng. There was a great sense of goodwill among those attending, a chance to catch up with other members, meet new people, know that you are not alone, and going home feeling better than when you arrived. 

If you feel isolated, please reach out to your state-based Association, join a Support Group, or, if you would like to help to start a Support Group in your area, let us know, we can give you the assistance and contacts you need. Please do not suffer in silence.   Scleroderma NSW – 0414 390 449 (Marilyn)