Mother’s marathon raises awareness of syndrome
A woman from Narooma on the NSW south coast has walked from Adelaide to Canberra to raise awareness of a common but not widely known disorder called Marfan syndrome.
Trish Carey was inspired to undertake the 1,200 kilometre journey after the death of her 28-year-old daughter Lisa from the illness.
Marfan syndrome is a genetic condition which weakens the body’s connective tissue and can result in death, for example when the aorta stretches and ruptures.
Sufferers are generally tall and lean with an outstretched arm span greater than their height.
Ms Carey says the walk has been a great success because more people now know about the condition.
“In getting that awareness out there, these people will go and be checked and be diagnosed, if they do have it,” she said.
“Because there are so many people out there that are undiagnosed and they’re diagnosed at autopsy which is far too late.”
Ms Carey is hoping her marathon walk might ultimately lead to the establishment of a foundation to support people suffering from the syndrome.
University of Queensland researcher Professor Malcolm West supports the idea of a foundation.
Professor West says the hereditary disease affects one in 5,000 people and is about as common as congenital heart disease.
But he says even some health professionals do not know much about the condition.
“We’re hoping to try to get some government assistance,” he said.
“One of the aims of this project is to establish an Australian Marfan Foundation along similar lines to foundations in other countries, so that the problem can be focused upon and support for families provided.”