From Misdiagnosis and Mystery… to Legitimacy and Hope

Historically, Visual Snow Syndrome (VSS) has been one of the most difficult conditions to diagnose. Receiving a correct diagnosis was typically a struggle for people with VSS and still is for many of them.

According to data gathered by VSS researchers (based on patient accounts), as of 5 years ago, it estimated that Visual Snow Syndrome was misdiagnosed 85% of the time. (Note: this only includes recorded cases of VSS.) But a distinction must be made between not having a diagnosis and a misdiagnosis. Of those 85%, half of the patients were given a diagnosis of having “nothing wrong” with them or “no diagnosis”. The other half were misdiagnosed with another medical condition that was not VSS, the most common being ocular migraine & visual aura without infarction. In actuality, their symptoms persisted and they had Visual Snow Syndrome. Thankfully, it is now estimated that this number has reduced to roughly 56%.

The nature of a syndrome, like VSS, is that it entails a collection of symptoms. Many VSS symptoms can be attributed to other conditions as well, which fostered confusion. But what eventually made Visual Snow Syndrome distinct was that patients saw the hallmark symptom, “static”, and they experienced visual disturbances in both eyes 24/7 — whether they were open or closed. That symptom was unique to Visual Snow Syndrome. When physicians hear their patients say they are experiencing this, doctors should immediately think of VSS. Although it shares some symptoms with these conditions, Visual Snow Syndrome should not be confused with HPPD or migraine with aura, which are separate entities with different pathogenesis. It should also be noted that people with VSS can experience symptoms from birth or at a later point in life. People of all ages can be and are affected.

Before the progression of modern science/technology and VSS advocates intervened, Visual Snow Syndrome patients were almost always not believed. Many were told they were making up their symptoms or “imagining things”. This was not true, of course. Some even likened Visual Snow Syndrome to a supernatural ability; seeing the “static”, flashing lights, and blinking dots that VSS causes was sometimes interpreted as the power to see “spirits” or “fairies”. This all created an unnecessary and unfair stigma, confusion, and dismissal surrounding VSS. Furthermore, doctors would assess the eyes of people with VSS only to find that their eye exams were normal. But they were studying the wrong area of the body: Visual Snow Syndrome originates in the brain.

Initially, lack of education and understanding that Visual Snow Syndrome is a neurological disorder (not a structural issue with the eyes) plagued the medical community. VSS patients were typically sent to optometrists or ophthalmologists (eye doctors) when they should have been referred to neurologists or neuro-ophthalmologists (brain or brain-eye doctors). As a result, many patients believed they were going blind, that their symptoms would worsen, or their vision was deteriorating.

Even then, the legitimacy of the condition was still in question. But thankfully, now, that has been rectified.

One of the primary reasons that VSI was founded was to get Visual Snow Syndrome officially recognized by the medical & scientific communities. Our collective efforts have been successful. Organizations and hospitals that once did not recognize VSS are now acknowledging the condition and have created new departments dedicated to helping VSS patients. Acknowledgment from institutions, such as Mayo Clinic, Cleveland Clinic, Healthline, Very Well Health, NORD, and NIH has been instrumental in giving Visual Snow Syndrome the legitimacy it deserves. Through the awareness that has been generated as well as the VSI-funded publication of scientific studies/evidence by medical experts, the existence of VSS has been further proven and solidified. Scientific research about Visual Snow and physician & patient accounts continue to help shed light on new, important information about the condition.

The VSI team has heard from people with Visual Snow in over 83 countries and counting. Once thought to be rare, today, we now know that Visual Snow affects an estimated 2-3% of the world’s population. This includes people diagnosed with Visual Snow Syndrome and those who experience the condition’s hallmark symptom, a bilateral unceasing layer of “static” vision.

Now that the condition’s existence can no longer be questioned, education about VSS and how to properly diagnose patients within the medical community is essential.

However, although significant steps have been made in the right direction, we want to mitigate this further, to the extent that every VSS patient can get the correct diagnosis they deserve. That was and will always remain one of the VSI’s primary goals.

Click here to view the Diagnostic Criteria for Visual Snow Syndrome (to share with your doctor, etc.), as well as a more comprehensive list of symptoms.

To learn more about VSS and how/why it can affect each person differently, please visit the following page: Helping Yourself and Others Understand Your VSS