Six women living with the rare lung disease, lymphangioleiomyomatosis (LAM), participated in a walk on Sunday 31 May in Sydney’s Centennial Parklands. The women were supported by approximately 60 family members and friends. Like the 101 women known to be living with the fatal disease in Australia (of an estimated eight in a million worldwide) they have sporadic LAM, which often strikes when women are in their 20s and 30s.
Sunday’s walk culminated in the labyrinth featured on ABC TV. Patron, Dr Linda Friedland, praised the healing powers of meditation that can be experienced in a labyrinth. Kristy Hope was 26 when she was diagnosed nine years ago. She has experienced breathlessness, multiple lung collapses and other dreadful symptoms. “Any woman can develop LAM – she could be your mother, your daughter, your sister, or you,” she said. “Raising awareness is crucial because LAM is often misdiagnosed, delaying treatment.”
Marking the 5th Worldwide LAM Awareness Day, the walk raised funds for research. “With government funding hard to come by, the onus is on not-for-profit groups like LAM Australia Research Alliance to attract donations. Over the past few years, we have raised more than half a million dollars for research at Sydney’s Woolcock Institute,” said Janet Neustein, President. “More work is needed to speed diagnosis and develop better treatments.”