Queensland is paving the way for clinical care and research into a rare, inherited disorder called Friedreich’s Ataxia.
A clinic was opened today at the Royal Brisbane and Women’s Hospital, offering world best care for patients suffering from this disease.
Louise Morton reports.
TRANSCRIPT
Friedreich’s Ataxia is a neurological disorder that causes progressive damage to the nervous system.
It only affects one in 50,000 people, but is crippling and life threatening for sufferers.
The new clinic brings together all the specialists that patients need to see under one roof.
Dr Kate Sinclair, Child Neurologist at Royal Children’s Hospital: “That’s the whole aim of this clinic is that we cover everything from clinical care right the way through to pushing for a cure.”
Most people affected by the disorder are confined to a wheel chair within a few years of diagnosis.
Although Friedreich’s Ataxia is not a curable condition, the symptoms can be managed with medication and physical therapy.
As well as physical treatment, patients will also have access to psychological therapy to help them cope with their condition.
Dr Kate Sinclair, Child Neurologist at Royal Children’s Hospital: “We hope to undertake some psychology based research as well because there are huge stresses and burdens associated with this kind of diagnosis for the family and for the patients.”
Mike and Mandy Dwyer have two daughters who suffer from Friedreich’s Ataxia.
Mike is also the co-founder of the Friedreich’s Ataxia Research Association and was instrumental in seeing the new clinic get on it’s feet.
Mike Dwyer, Friedreich’s Ataxia Research Association: “There’s no question that they are providing the gold standard of care now for the treatment of this condition.”
As well as working together to provide better patient care, the specialists will be able to combine their research to work towards a cure.
Jamie Lee Dwyer, Ataxia sufferer: “A cure to me is everything and this is just another step in the right direction.”
Louise Morton, QUT News