Alright listen up guys
I've been meaning to make an educational post about this for a while, so here we go:
I have a rare condition which affects my eyes, called Visual Snow Syndrome. Not much is currently known about what causes it, how to treat it or it's long-term affects, but research is ongoing. It's basically believed to be a condition of the brain processing images of the eye, most VSS sufferers have technically good vision and otherwise healthy eyes. This causes much anxiety and confusion when a patient develops the syndrome and it told by doctors and optometrists that their eyes are healthy!
So - here are some of the symptoms VSS sufferers deal with on a daily basis:
Visual static or 'snow', like tiny moving dots across their entire field of vision. This never goes away and it present even when the eyes are closed.
There are two main types of 'snow', pulsing type - in which larger dots of white or black may obscure the vision, or broadband type - which mimics the static on an old TV set.
Sensitivity to light
Reduced night vision
Floaters, flashes, and other visual disturbances
Headaches or migraines
Auras around bright lights
Repeating visual echoes after looking at a bright light
Balance issues/ vertigo
Tinnitus
Fatigue
Depersonalisation
Depression/anxiety
Worsening of symptoms when tired or eyes are fatigued (for example by long periods of looking at a screen)
VSS is not life threatening, but there is currently no cure and many patients find the condition very debilitating. In some cases the condition can come on suddenly (as in my case) but often patients do not realise they even have it until reading about it, as they have always had it and considered it to be normal. This may be one of the factors in why it has only just been recognised as a syndrome, as many sufferers may still be unaware they have it.
For more info on VSS please see the links below, and if you can please SHARE this post to raise awareness!
VSS can be complete hell to live with, and as most doctors and optometrists have never even heard of it, so being diagnosed and taken seriously is a real struggle. The more people are aware of this the more likely it is to be fully researched!
Links:
Genetic and Rare Diseases Information Centre
National Organisation for Rare Diseases (NORD)
Visual Snow Initiative (donate here!)
Neurology.org (academic article)
NHS Health Research Authority
