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Thursday, 14 February 2013
Page: 1493


Mr BROADBENT (McMillan) (16:39): We can learn from our constituents much that we would never know if we did not find ourselves in the position as their local member. This week I have been made aware of a debilitating disease previously unknown to me and probably unknown to most in the House. Scleroderma has absolutely devastating consequences for those who suffer this unusual ailment. The word 'scleroderma' means hardening of the skin and its most common symptom is a thickening and hardening of the skin particularly in the hands and face. There is estimated to be over 5,000 people living with scleroderma in Australia, therefore, funding for scleroderma research is desperately needed. Scleroderma Australia's mission is to campaign for a world in which equal rights, treatment and care offered to people with scleroderma and where such diseases are not forgotten but afforded the consideration and attention of other more widely known diseases.

Having a disease that nobody has heard of is a very lonely business. As I said, I was completely unaware of this condition until I was approached by Mr Frank Leach who visited my office recently seeking support for this funding. At this stage a self-help organisation, Scleroderma Victoria, is working hard to build its membership in order to continue to fund a nurse operating out of two Melbourne hospitals. I would like to thank Mr Leach for bringing this to my attention and also congratulate the members of Scleroderma Victoria for their ongoing work.

Frank Leach is a determined activist who obviously has had direct contact in his life with the disease which has caused him and his family an enormous amount of distress. I believe he is suffering not only from the illness but from dealing with the illness. There are many people in our community that live a life of loneliness because of what their families are dealing with on a daily basis, which is sometimes unknown to us. I would like them to know that, when you bring these things to the attention of members of this House, those members are more than willing to bring them to the attention of the parliament and, therefore, the nation. Let us try together to end this loneliness, at least, for some in the world and in our community.