The founder of the Visual Snow Initiative, Sierra Domb, tells us about her journey with visual snow syndrome. Sierra struggled to find support and answers for her condition and is now on a mission to make sure no one goes through what she did. Sierra explains how her experiences shaped the charity now providing support, education, and furthering research for visual snow syndrome.
What is visual snow syndrome?
Q. Please can you introduce the Visual Snow Initiative and explain why you founded it?
I had several misdiagnoses and was told I might go blind or even die. I spent years believing this—until I discovered what visual snow syndrome was.
Years ago, I began experiencing symptoms of Visual Snow Syndrome (VSS). Thousands of black dots and flashing lights in my field of vision 24/7 was not normal. I visited numerous medical professionals and underwent years of testing, but no one could provide an answer. I had several misdiagnoses and was told I might go blind or even die. I spent years believing this—until I discovered what visual snow syndrome was. An online article, written by Dr. Peter Goadsby, perfectly described my symptoms. I reached out to him, and he made my official diagnosis of visual snow. He explained how, despite the scientific evidence, many in the medical community were unaware of VSS, and some even questioned its legitimacy. Countless patients around the world were being turned away, undiagnosed, isolated, and void of hope. That thought saddened me deeply. I hoped that fostering education and awareness for visual snow syndrome could reduce the problem. Doctors should know more about the condition, diagnose it, offer helpful resources to patients, and become interested in furthering research. In 2018, I organised the first-ever Visual Snow Conference in San Francisco. Dr. Goadsby and other experts from around the world joined me in presenting facts about visual snow. We shared current research and discussed VSS with those affected, their families, and medical professionals. I continued my mission by founding the Visual Snow Initiative (VSI), a non-profit dedicated to raising awareness, spreading education, and funding worldwide research for VSS.
In 2018, I organised the first-ever Visual Snow Conference in San Francisco. Dr. Goadsby and other experts from around the world joined me in presenting facts about Visual Snow. We shared current research and discussed VSS with those affected, their families, and medical professionals.
Q. I understand your diagnostic journey was difficult. What is the biggest barrier to receiving a diagnosis of VSS?
Another obstacle was clarifying that visual snow syndrome is neurological, not ophthalmological: the parts of the brain that control visual processing operate abnormally.
Previously, the biggest obstacle was a lack of knowledge about visual snow syndrome. The creation of VSI and the distribution of our content internationally has dramatically improved this. We have developed diagnostic criteria for VSS and an online global directory of doctors/specialists so we can direct people to the right specialists and resources. Videos, campaigns, and online content about visual snow further our mission, and VSI has featured in the media and academic articles. We collaborate with doctors and scientists globally to educate and fund research. Another obstacle was clarifying that visual snow syndrome is neurological, not ophthalmological: the parts of the brain that control visual processing operate abnormally. People with VSS do experience visual changes and impairments 24/7, yet their eye examinations typically yield “normal” results.
Q. What was your primary objective in setting up Visual Snow Initiative and how has this evolved?
Firstly, to generate awareness and educate the medical community. We needed them to recognise VSS, learn through our resources and events, and accurately diagnose it. Our information has been translated into many different languages and VSI has now been heard from people in 70 countries. We maintain a worldwide directory of doctors/specialists who now recognise and diagnose VSS. Our global research team of VSS experts collaborate and raise awareness for VSS within their respective fields and communities.
Q. Attracting research in rare diseases can be challenging: what is the current research environment like for visual snow and how does VSI support this?
Visual snow syndrome is not a disease; it is a syndrome or a collection of symptoms. Symptoms can be debilitating, ranging from visual (palinopsia, photophobia, enhanced entoptic phenomena, etc.) to non-visual (tinnitus, depersonalisation, etc.).
The biggest obstacle is a lack of funding. Donations translate to greater awareness and increase the possibilities for treatment and research. The VSI has brought together doctors, researchers, and scientists from around the world who are collaborating. In the future, this collaboration will lead to treatments or, ideally, a cure, for patients. VSI funds research worldwide. Studies are taking place currently in Australia, England, and the USA. In addition to research, the VSI works on near-term solutions and possible treatments. Studies in California and Texas have had positive initial outcomes in reducing VSS symptoms and returning those affected to their previous quality of life.
Q. What can people do to support raising awareness for visual snow syndrome and what advice would you give to others?
There are countless noble causes, but this condition’s severity does not match the attention it has received. Please help spread the word about Visual Snow, follow us on social media, and join the cause by donating! Your contribution makes a difference to people of all ages and backgrounds around the world. To those with VSS, you are not alone—thousands are affected. I really feel people need to hear that because VSS can be isolating and scary. Knowing that someone else understands your experience can keep you going, and this will inspire others too! If someone doubts you, feel confident expressing yourself and using the resources on our website or published studies.
Things may look and feel different, but there are still plenty of things you can do. Focus on what makes you happy. Make some lifestyle adjustments if you must. Look out for your health, both physically and mentally. Focus not on what you cannot do anymore, but what you can do. While the experts work on solutions, shifting your perspective can do wonders.
'Visual Snow Syndrome is a neurological condition that impacts an individual’s vision, hearing, and quality of life. Patients see flashing lights, flickering dots, and static, all of which obstruct their visual field 24/7. There is no relief for them, even when their eyes are closed. Our goal is to help those with Visual Snow live and enjoy their life without fear. Together, we will find a cure!'
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Rare Revolution Editor