For Steve Gillis, tinnitus, brain fog, and visual disruptions have become "ever-present companions" ever since he recovered 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.
Even after numerous tests spread across half a year, no alterations were found in either his eyes or brain.
Mr Gillis was ultimately diagnosed towards the end of last year with visual snow syndrome (VSS), which is a neurological disorder impacting vision, auditory perception, equilibrium, sensory interpretation, and cognitive abilities.
Experts approximate that VSS impacts roughly 2 to 3 percent of the worldwide population, and they state that the precise cause remains unclear. However, possible triggers might include concussion, illness, pregnancy, or migraines.
Sometimes, people can be born with VSS.
Mr Gillis mentioned that the condition greatly impaired his capacity to drive, read printed material, and play golf. He frequently felt overwhelmed when navigating shopping centers and public spaces.
"However, even when I'm at home and there are several individuals in a room with various discussions taking place, I frequently end up retreating to my bedroom or simply withdrawing from that setting," he explained.
Often, I encounter remarks like, "I heard you have an illness, yet when I see you, you appear to be doing well," implying that since I seem okay externally, I should feel perfectly fine internally.
it might feel very lonely.
Looking for answers
Mr Gillis endured a lengthy path to his diagnosis, expressing frustration over what he saw as insufficient knowledge among healthcare providers.
He stated, 'The guidance essentially amounted to "We hope your body can figure out how to heal itself," and "Good luck."'
Dr Steve Leslie, a behavioral optometrist based in Perth, mentioned that individuals dealing with VSS frequently face rejection from healthcare providers.
"Quite often, individuals consult with five or six physicians in search of answers, yet nobody provides a diagnosis due to the limited awareness surrounding this condition," he explained.
In December 2024, the World Health Organization assigned VSS an identification code within the eleventh version of the International Classification of Diseases (ICD-11). Advocates believe this could result in increased acknowledgment and public understanding.
The inclusion came after advocacy efforts by the international nonprofit organization, the Visual Snow Initiative, which took place a year earlier.
Sierra Domb, who established the program, herself deals with this condition and mentioned that she was informed obtaining a permit might take between 30 to 50 years—a timeframe she chose not to endorse.
She mentioned that tears came down when she got the "momentous" news regarding the diagnosis code.
She mentioned how her thoughts instantly turned to all those individuals and their loved ones who had been looking for answers for many years, only to be ignored, told that their symptoms did not truly exist, or that they were just exaggerating, or even being brushed off because they were considered ‘too young’.
Dr Leslie mentioned that the ICD code brought significant relief to patients, and she hopes this will result in increased research prospects as well as greater recognition of the issue amongst healthcare professionals.
Mr Gillis expressed hope that this addition would lead to "increased recognition among healthcare professionals."
He mentioned that doctors could more easily identify, counsel, and potentially provide treatment for individuals suffering from this condition in the future.
Following a difficult year, Mr Gillis is set to look ahead towards an international journey with his spouse and caregiver, Jenny.
Even though VSS had transformed his life, according to Jenny, her spouse's fortitude was astounding.
"I must say, taking him places can be quite annoying since he isn’t an ideal passenger," she chuckled.
