Saturday, May 16, 2015
Charles Perkins Centre, University of Sydney.
Sylvia Freedman was diagnosed with stage 4 Endometriosis when she was 21. Two years later when Syl was facing her second laparoscopy her Mum, Lesley, began to research this mysterious disease. She read about a medical treatment for Endo that seemed to be having success relieving pain and symptoms for women and girls with Endometriosis in other countries.
Lesley and Syl mounted a public campaign to bring the medication to Australia. In little over a month they had collected 74,500 signatures and convinced the multi-national pharmaceutical company to bring the medication to Australia.
In the process the profile of Endometriosis in Australia was raised dramatically as Lesley and Syl were featured on television, radio, magazines, online publications and international discussion forums. They launched EndoActive Australia & NZ a non-profit Incorporated Association dedicated to campaign for community education about Endo, to raise awareness and advocate for early diagnosis.
In May, EndoActive will hold a public conference, a forum for doctors and patients to share perspectives of Endo, at Sydney University. They have an exciting program featuring thirteen distinguished medical specialists, health professionals, scientists and academics eager to share their knowledge and insights into Endo. Latest research and trends in treatment and self- management will be discussed. This conference is unusual in that patients (consumers) are encouraged to attend as well as health practitioners seeking to up-skill in this often poorly understood but, sadly, very common disease.
One in ten women and girls suffer Endo and it is estimated to cost Australia more than $7 billion annually. Endometriosis causes chronic pelvic pain and other debilitating symptoms that prevent many young women from completing school or attending university. It is one of the main causes of infertility.
Later in the year EndoActive plans to hold more specialised seminars and will begin fundraising for research.
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