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. 

Central Clinical School participates in Rare Disease Day 2022

See video featuring patient advocates and CCS researchers

Hear from patient advocates and medical researchers as part of the Central Clinical School Consumer and Researcher Engagement (CCS CaRE) program for 28 February Rare Disease Day 2022. The diseases we talk about are Myeloproliferative Neoplasms, Autoimmune Encephalitis,  Friedreich's Ataxia, Visual Snow, Primary Immunodeficiency and brain cancer, including glioblastoma. We will be publishing our complete playlist on 28 February and will update this description with a link to the playlist.

See more:

• www.monash.edu/medicine/ccs/community-engagement
• www.rarediseaseday.org/countries/australia/

Visual snow causes being revealed

A/Prof Jo Fielding explains the research. See video

Neuroscientists have recently characterised how visual processing is disrupted in the condition known as Visual Snow Syndrome (VSS).

The hallmark symptom of VSS is constant and dynamic “snow” across the entire field of vision.

Seeking clarity on a fuzzy neurological condition

A/Professor Joanne Fielding and Professor Owen White from the Department of Neuroscience had a busy Friday morning last week, discussing their research into Visual Snow on both Neil Mitchell's 3AW radio show, and then featuring on Melbourne's Channel 9 News.

Visual Snow is thought to affect the way the brain processes optical messages from the eyes, with affected people viewing the world through a film of what looks like TV static. There are many related symptoms, including migraines, floaters, auras and more. It often takes years for people to be formally diagnosed, creating a tense and frustrating wait.

Brain Awareness Week lecture

Central Clinical School and Alfred Health are teaming up to help celebrate Brain Awareness Week between March 11 - 17th. The annual week is hosted internationally by the Dana Foundation, and aims to draw attention to the value of brain research.

All staff are invited to a lecture in the former AMREP lecture theatre between 2-3pm on Thursday 14th March.

A$140,000 donation kicks off research for Visual Snow

Back row (L - R): Dr Ben Sinclair, Paige Foletta, Dr Scott Kolbe,
Front row (L - R): Dr Meaghan Clough, Professor Owen White,
Associate Professor Joanne Fielding, Emma Solly.

Thanks to a donation from the US-based non-profit Visual Snow Initiative (VSI), Monash University Department of Neuroscience researchers, Associate Professor Joanne Fielding and Professor  Owen White, will conduct Australia’s first  exploration of an emerging neurological syndrome called Visual Snow.

Many young people are affected by the hallmark symptom of constant and dynamic “snow” in the entire field of vision.  One minute you see the world clearly and in an instant, without warning, a life is changed forever. It can be a 24/7 battle because it never goes away with the eyes opened or closed. Others are born with the condition, and many don’t realize how abnormal their vision really is. A new dilemma can occur for those seeking a diagnosis or treatment. Eye tests almost always come back normal because Visual Snow is not an eye disorder but a brain malfunction.  Because Visual Snow manifests itself in the eyes, it often leaves both patients and physicians in limbo, uncertain of where to go next for a diagnosis. This also makes it difficult to estimate how many people are affected.

Participants sought: Migraine and visual disturbance, known as 'visual snow'

Visual snow can granulate visual perception as per the
right-hand image pictured here. Image: Medpage today

The problem

Currently, there is little understanding of the causes of Visual Snow (VS) and the relationship between VS and migraine.  As such, more research needs to be conducted to better understand the underlying mechanisms of these conditions.

A large portion of the brain is involved in vision and controlling the movement of the eyes. Other research has shown that simple eye movement tests and visual perception tasks can give important information about the mechanisms underlying neurological conditions.

What we want to find out

We wish to investigate whether differences in performance on eye movement and visual perception tests can account for the symptoms of VS and the differences in symptomology between VS and migraine.