By Farid Farid in Sydney

Thyroid eye disease is a rare, complex, progressive and potentially vision-threatening autoimmune condition estimated to impact 23,000 Australians.

Towards the end of her first pregnancy, more than two decades ago, Veronica Miller felt stabbing pains that forced her to sleep with one eye open.

She was diagnosed with Thyroid Eye Disease, or TED, a rare, complex, progressive and potentially vision-threatening autoimmune condition which affects some 23,000 Australians.

The debilitating illness disproportionately affects women at a rate of 80 per cent, and ican cause double vision, stopping people from driving and working. In extreme cases, it spells loss of vision.

“My husband noticed I was sleeping with my left eye open and I had a feeling like sand in my eye,” the 53-year-old mother told AAP. “I was really intolerant to glare and light, and I had watery eyes and a stabbing eye pain. My friends noticed my eye looked different, like it was kind of staring and wide open.”

After going into remission, the condition again reared its head and the former domestic violence caseworker from Mudgee in Central Western NSW felt the same symptoms of double vision and blister-like bubbles of fluid in her eyeballs.

She is heartened by a groundbreaking medication Tepezza (teprotumumab) being listed for the first time on the Pharmaceutical Benefits Scheme from Sunday, for eligible adults with active moderate to severe TED in Australia.

Around 450 new cases of the disease develop each year nationwide and it’s hoped the PBS listing will bring comfort to them and many others who experience inflammation and swelling behind the eyes resulting in bulging, redness and eyelid retraction.

Living in a remote area has meant three months of weekly four-hour trips to Sydney for Ms Miller with no specialist ophthalmologists in her region to administer specific treatment.

“My ability to see was very affected so I had to rely on public transport to get to my appointments in Sydney or my husband would drive me get MRI scans with a specialist who understood thyroid eye disease,” she explained.

Centre for Eye Research Australia Associate Professor Jwu Jin Khong has been at the forefront of research and clinical trials focused on investigating effective treatment strategies.

She said Tepezza’s approval was a game-changer in healing the auto-immune disease because it moves beyond steroid treatments administered intravenously which only tackle swelling and eyelid redness.

With the teprotumumab medication, the intravenous infusions are every three weeks, rather than weekly, for a period of about six months.

“It is better because eye protrusion is significantly reduced from the staring or startled appearance and it works on about 80 to 90 per cent of patients,” Dr Khong said.

Beyond the physical symptoms, TED can also significantly affect mental health, confidence, employment and social life.

“If I get this disease again, I’m very relieved to know the treatment options I have increased, and that I could get this new treatment and it would work quicker and better,” Ms Miller said.