Visual Snow Syndrome research challenges: Rare Disease Day feature

L-R: A/Prof Jo Fielding says of Visual Snow that "it is very difficult,
if not impossible to diagnose"; and patient advocate Patricia says VSS
is "quite challenging". See video (1:57 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

The Department of Neuroscience’s Associate Professor Joanne Fielding is involved in research on Visual Snow Syndrome (VSS), a neurological condition primarily affecting the processing of sensory information. Even though it is thought to affect up to 2% of people, it is not widely recognised or diagnosed correctly by the medical community. 

Patients with the condition experience continuous visual disturbance over their entire field of vision. The disturbance manifests as visual static, or ‘snow’ - tiny flickering dots similar to an untuned analogue television. 

A/Prof Fielding is a leading researcher on VSS. She says, “One of the big issues with this syndrome is that it's very difficult, if not impossible to diagnose. 

“All of the symptoms are strictly sensory, affecting the way a person with VSS perceives the world - but VSS is not measurable by any clinical examination or even on an MRI scan.

“Our research program entails investigating the ocular motor system - how the eyes move, and how they respond to the brain telling them where to pay attention.  By looking at eye movements we can measure where attention is directed. We are developing sensitive techniques to interrogate and measure attentional processes in those people with VSS.”

See the video of a patient advocate, Patricia, and A/Prof Fielding respectively talking about the lived experience of the disease and its research challenges. 

This Rare Disease Day feature is presented by the CCS Community and Researcher Engagement (CaRE) committee. See more about CaRE: www.monash.edu/medicine/ccs/community-engagement