Vanessa Roberts rare disease worsened by location

Perhaps the only thing worse than being diagnosed with a life threatening illness is being wrongly diagnosed with one, then told you have something else.

In August 2015, Vanessa Roberts was informed she probably had multiple sclerosis (MS), serious nerve damage which disrupts communication between the brain and the body.

After 18 months of being given an incorrect course of drugs and treatment, she was diagnosed with the much rarer disease Acromegaly –  a tumour on the base of her brain which causes parts of her body to swell. 

Swamped by medical bills, she now awaits lifesaving surgery in Sydney to remove the tumour. 

“The fact that it took so long to diagnose my condition has not helped. I knew what they were giving me wasn’t working, and I was just determined to seek specialist advice elsewhere. It was really costly though to keep having to travel to other cities to seek out advice,” Ms Roberts said. 

Her case once again illustrates the unique challenges regional patient face – both in terms of accessing specialists and travel costs of going to capital cities for treatment. 

Vanessa is the third person in the Riverina to be diagnosed with Acromegaly, and there are only 2000 known cases in Australia.

She has experienced severe swelling, her wedding ring has had to be increased by five sizes.  Unable to walk properly, she’s been off work for several months, and has mounting bills due to multiple trips to Sydney, lost income and costly specialist appointments. 

Her story also shows how the Griffith community chip in when public health services fall short. She receives support from a gofundme page. But she still struggles with debt.  

The good news is doctors say post-surgery she will have an 80 per cent chance of full remission.

Government programs to subsidise travel and medication for regional patients generally only cover a small fraction of the costs –pushing many families into financial ruin.

The issue was previously raised by Chris Brugger, a Hodgkin’s disease sufferer who has strongly advocated for families facing similar challenges.