Daniel Kondziella’s recent opinion piece, “Visual Snow Syndrome and the emperor’s new clothes”, is as confounding as it is irresponsible. The author states “now and then, I see a person with Visual Snow Syndrome”. Evidently and self-admittedly, he has limited experience with VSS patients. Despite this, he still attempts to refute the findings of numerous accredited doctors and researchers who have dedicated their professional lives to learning about Visual Snow Syndrome (VSS) and helping patients. He refuses to view “people with Visual Snow” as “patients”. The author claims that VSS is a “harmless psychological phenomenon”, rejecting its pathology and denying the negative effects its symptoms can have on patients. He feels that VSS is “entirely benign”, and there is no need to develop treatment strategies to help anyone with VSS. Thus, he discourages the medical community from pursuing this any further.
Patient’s with Visual Snow Syndrome
Naturally, having to endure all of this and missing out on many areas of life can be distressing. As a result, VSS can be debilitating and devastating on patient’s lives. Patient’s also often develop anxiety, depression, and/or derealization. Dismissively being told “nothing is wrong” is both insensitive and potentially detrimental to their wellbeing.
VSS affects everyone differently and ranges in severity. Some people have all or some of the symptoms of VSS. There are also people who are born with VSS and others who experience spontaneous onset. Many believe everyone sees and experiences life the same way they do. This is different than having to adapt to a completely new way of life, as people who never had VSS. For them, there is often a stark contrast between their former and current life.
Historically, patient’s with Visual Snow Syndrome have been marginalized and misdiagnosed. The author acknowledges that its “existence has gone undetected until a few years ago”.
The author states that after having seen a person with VSS “every now and then”, “they leave the consultation relieved after being reassured that visual snow syndrome is a harmless condition”. Any patient being reassured by their doctor that any symptoms of unknown origin are harmless will always feel relieved.
The author did not reveal any information about the patients he saw. Visual Snow Syndrome affects patients differently depending on a myriad of factors. These include the severity of their symptoms, preexisting conditions, socio-economic factors, genetics, and proximity to a physician with knowledge of VSS. All of which must be considered.
Ultimately, the author appears bothered by people who are bothered by Visual Snow Syndrome.
Further Visual Snow Syndrome Research Needed
The author also claims that “biological mechanisms of visual snow syndrome are poorly understood”. Although it was not his intent, this statement rationalizes the need for further VSS research to better understand the condition. However, he links poor understanding of VSS to “case reports and surveys based on self-help groups.” The author criticizes researchers for recruiting “self-elected people via online”. Yet, he did in his 2020 paper, “Prevalence of visual snow syndrome in the UK”, by utilizing crowdsourcing methods for his study.
The hypocrisy notwithstanding, the author claims, “these people come from a tiny fraction of the population with visual snow who are not only aware of the condition but also interested to participate in the study”. There are still a limited number of medical professionals who openly advertise studies about VSS or specialize in the syndrome. Researchers have also had to adapt to recent times and obtain data virtually.
Naturally, those affected by the condition and their families will have to go online if there are no opportunities or support presented to them offline. We cannot dismiss data from everyone who has a condition or is affected by it as “biased”; that would be unreasonable and discredit an endless amount of other accepted studies as well.
Studying VSS accurately, one will discover that the syndrome is mild but still frustrating. For other patients, their symptoms completely derail their life, forcing them to face difficulties with daily tasks. Activities and responsibilities, such as driving, reading, working on a computer, or attending school often become impossible. It is exhausting trying to complete a daily task while your entire visual field is swarmed with static, flashing lights, and palinopsia.
Dr.Daniel Kondziella’s Opinion
Like a movie critic, the author is entitled to his opinion. But unlike a movie critic, the author is a doctor who is creating dangerous moral and ethical implications.
To make an accurate statement that applies to all individuals with Visual Snow Syndrome, one must first understand that not all patients are the same. Then, they must consider a proper diagnosis based on symptoms. To date, the VSI team has heard from thousands of people affected by VSS in 88 countries and counting. Most are desperate for answers and resources.
The author minimizes the struggles of a marginalized group who have begun to receive overdue acknowledgment and care. Now that VSS is gaining more awareness, which has been achieved through hard work, vulnerability, and fact-based evidence, he wants to attack their work. The author masks his disrespectful and unnecessary critique of VSS researchers, patients, and their families as “scientific commentary”.
People with medical conditions, like VSS, have to go through enough. There is enough scientific data that substantiates autonomy, legitimacy, and negative impacts of Visual Snow Syndrome. Clinical data has already proven the condition is real. The scientific opinion also maintains that VSS can and does affect countless patients.
To ignore both researchers and patients by saying that VSS is “benign” is equivalent to turning back the hands of time. But for what purpose?
There is nothing wrong with analyzing the methods and other academic components of a study. It is the insensitivity and blatant disregard for the daily suffering of thousands of people worldwide that is both reductive and offensive.
Visual Snow Initiative Statement
The Visual Snow Initiative wants to assure everyone with Visual Snow Syndrome (VSS) and the medical community that the significant progress in awareness, education, and research will continue its upward momentum.