Life changing for young epileptic man
AMBERLEY mother Michelle Whitelaw didn't know where to turn when her 14-year-old son Jai was diagnosed with epilepsy in 2010.
"When Jai was first diagnosed, we felt so isolated and lost," she said.
Without support and information, Ms Whitelaw turned to Google to find out more about his condition.
"And believe me, there's a terrible amount of misinformation out there on the internet," she said.
Now an Australian-first telephone and email service will better inform and support families like the Whitelaws so they don't have juggle the shock of a diagnoses with feelings of confusion and isolation.
Epilepsy Action Australia this week launched The Epilepsy Nurse Line which is available from 9am to 5pm seven days a week.
"This new Epilepsy Nurse Line will make getting accurate and safe information so much easier - it's really going to help a lot of families," Ms Whitelaw said.
Epilepsy Action Australia CEO Carol Ireland said the hotline was developed specifically to improve health outcomes for people affected by epilepsy.
Each call will be answered by a registered nurse with special training in epilepsy management, so callers can trust the information they receive will be accurate and safe.
The service will be especially life changing for people living in rural and remote regions, who may have limited access to medical professionals trained in epilepsy management.
"There are around 250,000 people diagnosed with epilepsy in Australia," Ms Ireland said.
"And many of them only see their epilepsy specialist once or twice a year.
"The Epilepsy Nurse Line will mean that a person who has a question about their medication can get an almost instant response, or a person concerned about a family member who has had a seizure can get immediate advice as to what to do next."
The epilepsy nurses on the helpline are qualified to answer questions about medications, lifestyle implications of epilepsy such as drinking alcohol, driving, playing sport or pregnancy, planning for the NDIS, employment, first aid, seizure management and more.
The nurses can also refer callers on to external services or more specialist epilepsy nurses and consultants, if the nature of the call warrants further assistance.