A YOUNG Cairns woman will attend a summit in Melbourne later this month to speak up for those who live in regional areas and suffer from a rare disease, says Leichhardt MP Warren Entsch.
Mr Entsch says 19-year-old Elyshia Hickey, who suffers from a rare disease called Ehlers-Danlos Syndrome, has been invited to attend the Summit as a Patient Organisation Representative of the Cairns Ehlers-Danlos Support Group.
“I have been a long-time supporter of Elyshia and her family’s campaign to get a greater and more effective level of support for those suffering from a rare disease,” said Mr Entsch.
“As recently as last November I was in Canberra when Elyshia told her story directly to Members of Parliament and Senators in a bid to raise awareness of the need for a new National Rare Diseases Plan in Australia.
“Now, I’m pleased to continue to support her as she lobbies for better services at a national level,” said Mr Entsch.
Elyshia says she believes that rare disease patients deserve the same level of care, empathy and knowledgeable treatment as a person with cancer or heart disease.
“If you have a rare disease that is invisible – you look fine on the outside – it’s almost impossible to get a correct diagnosis in a timely manner,” she said.
“Early diagnosis means early intervention and effective treatment to help young people reach their potential, but very few doctors and specialists have the knowledge and expertise to diagnose rare invisible conditions.”
Ms Hickey says there’s a strong need for a National Rare Disease Clinical Advice Network that doctors can refer to for up-to-date information.
“We need a registry in Australia of doctors who have experience with rare diseases,” she said.
“We need more research into rare diseases – the flow-on being a better understanding of how the body works. A National Plan for Rare Diseases will help to alleviate these problems,” she said.
Ms Hickey will attend the National Rare Disease Summit in Melbourne on 27 and 28 March – when opinion leaders from patient, healthcare, research, government and industry organisations will come together to share knowledge and insight for future action.