It took a long time for Steven Gillis to be diagnosed with visual snow syndrome.(ABC News: Justin Hewitson)
Tinnitus, brain fog and visual disturbances are “constant companions” for Steve Gillis since his recovery from a virus in 2023.
He said he sees through “a set of filters” with a black and white pattern akin to analogue TV static, and has dark floaters that drag across his vision.
Despite undergoing several tests over six months, no changes to his eyes or brain were detected.
Mr Gillis was eventually diagnosed late last year with visual snow syndrome (VSS) — a neurological condition that affects sight, hearing, balance, sensory processing and cognitive function.
Practitioners estimate VSS to affect about 2 to 3 per cent of the global population and say the exact cause is unknown although potential triggers can include concussion, illness, pregnancy or migraines.
In some cases, individuals may be born with VSS.
Mr Gillis said the condition significantly affected his ability to drive, read print, and play golf, and he often found shopping centres and public venues “quite confronting”.
“But even at home, having multiple people in a room having conversations happening, often I’ll have to retreat to a bedroom or just withdraw from that environment,” he said.
“Frequently I hear people make comments that, ‘I heard you’ve got an illness, but when I look at you, you look great,’ so they’re assuming that because I look fine, I must be fine.
“It can be quite isolating.”
Looking for answers
Mr Gillis faced a long journey to diagnosis, and he was frustrated by what he described as a lack of awareness among medical professionals.
“The advice was basically: ‘Hopefully your body can find a way of curing itself’ and ‘good luck’,” he said.
Dr Steve Leslie, a Perth-based behavioural optometrist, said people living with VSS were often “rebuffed” by medical practitioners.
“It’s quite common to find people have seen five or six doctors trying to find an answer, and no one can tell them because the awareness of this condition is not as wide as it should be,” he said.
In December 2024, the World Health Organisation gave VSS a diagnosis code in the eleventh edition of the International Code of Diseases (ICD-11), something advocates hope will lead to greater recognition and awareness.
Its inclusion followed campaigning from international non-profit organisation, the Visual Snow Initiative, a year prior.
Sierra Domb, founder of the initiative, also lives with the condition and said she was told securing a code could take 30 to 50 years — a timeline she refused to accept.
She said she cried when she received the “monumental” news about the diagnosis code.
“My mind immediately went to everyone and their loved ones who had spent years searching for answers, only to be dismissed, told their symptoms weren’t real or that they were imagining things, or even dismissed as ‘too young’,” she said.
Dr Leslie said the ICD code was a “huge relief” to patients, and would hopefully lead to more research opportunities and awareness among practitioners.
Mr Gillis said he was hopeful the inclusion would create “greater awareness within the medical community”.
“That they can more readily diagnose, advise and hopefully, in the future, treat people with this condition,” he said.
After a challenging year, Mr Gillis will now look forward to an overseas trip with his wife and carer, Jenny.
Although VSS had been “life-changing” for Mr Gillis, Jenny said her husband’s resilience was “amazing”.
“I do find driving him around the place frustrating though because he’s not a very good passenger,” she laughed.
