When Canberra student Grace Bramwell found out her eye sight was rapidly deteriorating, she felt isolated and unsupported.
She was diagnosed with keratoconus in February and told surgery was the only option available to prevent further vision deterioration.
It came at significant expense, with the surgery costing her $5000 and yearly adjustments of a special contact lens costing about $800.
The procedure, called cornea collagen cross linking, was added to the medical benefits scheme on May 1, a move she welcomed.
But she says the community and some medical professionals had a long way to go to fully understand the condition.
"I remember when I sat nervously in the waiting room at the eye specialist; posters of elderly people reclaiming quality of life after cataract surgery filled the clinics walls," Ms Bramwell said.
"I had excellent vision until I did not. I felt out of place.
"My family has never had eye issues. I sat in the ophthalmologist room, he diverted my concerned gaze and informed me that I have a condition called ‘keratoconus’ and it would be my biggest challenge yet."
She said managing work and university had been a challenge and she is worried about what impact the condition will have on her future should her eyes deteriorate further.
Ms Bramwell said the condition was not understood well by optometrists, with her condition not picked up for a number of years.
She said the fact it was a degenerative disease that needed to be treated in adolescence or early adulthood meant the condition needed to be handled with more urgency.
"I felt really frustrated, I feel like it could have been picked up a lot earlier," she said.
"For sufferers such as myself and my identical twin sister, we are unsure about the true impact of this condition.
"I am uncertain when I will have to undergo the treatment to try to save vision in my right eye. I am unsure about how this will continue to impact my legal career or whether the rigid lens I have no option now but to wear will restore my vision or scratch my cornea and eventually require a cornea transplant.
"Sufferers face many hurdles after undergoing the cross linking procedure. It does not improve the vision, it is not a miraculous solution, it is simply an imperative step to vigilantly prevent the worst-case from occurring."
Chair of the Australian and New Zealand Cornea Society Professor Gerard Sutton and the listing of the procedure on the medical benefits scheme was an important step that made the treatment available to more people.
"From 1 May these people will have available to them a less invasive option that could mitigate the need for a full corneal transplant and that can either stop or slow down the progression of this visually impairing condition. This is a hugely positive and very welcome change," he said.