When Rob Oakley was diagnosed with muscular dystrophy as a 20 year old there were no services in Canberra that could help him.
Decades later, things are not a whole lot better.
There are no specific care options locally for neuromuscular conditions like muscular dystrophy.
It means people are forced to travel to Sydney or simply go without a treatment plan.
Mr Oakley, who is part of Captial Region Muscular Dystrophy, is trying to change all of that. The group thinks there are about 800 people in the region living with the condition.
"Muscular dystrophy basically tries to rob you if your mobility," he said.
"A lot of people suffer from low self esteem and there's a lot of anxiety that goes with it."
The disease is a muscle wasting disease which results in progressive deterioration of muscle strength and function. The genetic disorder is most commonly separated into early onset - which appears during childhood - and late onset - with symptoms often first appearing in mid to late teens.
Mr Oakley said the services available in Canberra were disjointed and largely dependent on a patient's ability to develop their own care.
"You have to take yourself up to Sydney and get yourself through the diagnosis process," he said.
"You think about a parent with a child confined to an electric wheelchair and every four or five months they've got to go to Sydney to do a sleep test or some other specialist."
Mr Oakley said there were neurologists with good knowledge of the condition in Canberra but it was usually very difficult to see them.
"This is a degenerative disease. So in terms of saying ok you've got an appointment but it's 18 months away, you're going to choose to go to Sydney if you can," he said.
"Others choose to just basically drop out of the system."
Mr Oakley said the community felt like it was at the bottom of the health system's priority list.
"We just don't rate a mention," he said.
Mr Oakley said Canberra needed a clinic for neuromuscular conditions, which could be created at little cost to the government.
We are not seeking special treatment, just an equitable level of treatment compared to other conditionsRob Oakley
It would build on the work being done out of Canberra University that is providing patients with targeted exercise plans.
Mr Oakley said the clinic could be based out of the University of Canberra Rehabilitation Hospital in Bruce.
"We are not seeking special treatment, just an equitable level of treatment compared to other conditions," he said.
"We've met with the last two ministers and they both supported it ... but it doesn't feel like there has been any progress towards developing that business case.
Health Minister Rachel Stephen-Smith said neuromuscular patients were seen as part of general neurology service at Canberra Hospital and general rehabilitation service at UCH.
But, she said, work was progressing to develop more specialised services.
"Canberra Health Services is working to develop a neuromuscular clinic and is working through models of care," she said.
Ms Stephen-Smith said executive director, division of medicine, Jacqui Taylor, was due to meet with Mr Oakley next week to work through strategies and review core services provided by neurology moving forward.