Recently Sierra Domb (Visual Snow Initiative Founder) and Dr. Peter Goadsby appeared on U.S television to discuss Visual Snow and raise awareness. On this talk show they were joined by Doctors: Travis Lane Stork (occupational emergency physician), Andrew Ordon ( occupational plastic surgeon), and Sonia Batra ( occupational dermatologist).
It’s a typically short and simplified presentation of Visual Snow on the show’s part with some questionable elements, but for what it’s worth I’ve written out the transcript for those interested and unable to access the video. Those in the U.S or Canada can presumably access the video normally via this link.
Dr. Travis Stork: It might seem like ages ago but before we had high-definition TV, the static on the screens was a real bummer. Now imagine seeing that static every moment of your life, even when you weren’t watching TV. Have a look…
Narrator: Picture seeing tiny snow-like dots every time you open your eyes. That’s the reality for those with a rare condition called visual snow. Experts say the condition is quite under-recognised, leaving people suffering without any answers. Often confused with other eye disorders, researchers say visual snow is actually caused by a neurological condition in the brain. Cells in the brain may be overly responsive to visual stimuli, causing extreme sensitivity to light and impaired night vision. So how is a person diagnosed? What are the symptoms? And could people be receiving ineffective treatments because of a missed diagnosis?
Dr. Travis Stork: Joining us now is Sierra, who suffers from visual snow, along with neurologist Dr. Peter Goadsby who’s joining us via Skype. And Sierra I’m so glad you’re here because this something a lot of people are naive to, they don’t even understand that this exists. When did you know something was wrong, and can you describe what it was like?
Sierra Domb: I first knew something was wrong, when I was in college, actually. And I was looking at my professor by the whiteboard. And I started seeing an overlay in both eyes of what looked like TV static. It was like I had a literal snowstorm in my eyes that I couldn’t escape.
Dr. Travis Stork: And if your vision, your actual vision…
Sierra Domb: My Vision itself…
Dr. Travis Stork: In terms of your eyes was normal…
Sierra Domb: My eyes structurally were completely fine, which was baffling to me.
Dr. Andrew Ordon: Could you tell us how you finally came upon the diagnosis?
Sierra Domb: I did find out what visual snow was on the internet and from there I found out about Dr. Goadsby, who is with us right now and he formally diagnosed me.
Dr. Travis Stork: And let’s bring Dr. Goasby into the conversation, because a lot of people don’t know about this, a lot of doctors do not know about this. So can you explain how this isn’t an eye issue and how as a neurologist this is something that you work with?
Dr. Peter Goadsby: What we’ve found is that if you take an image of the brain, the vision part of the brain, using something called fucntional imaging, then a small part of the vision bit of the brain is overly active in people who have visual snow, compared to those who don’t. So it’s clearly a brain problem, which is right in the valley of work of neurologists.
Dr. Sonia Batra: So is this a fairly rare condition, or do you think it’s just misdiagnosed because it’s just so hard to come here when the visual tests are all normal?
Dr. Peter Goadsby: It’s difficult to diagnose if you’ve never heard of it, so one of the problems is there’s a substantial group, about a third, who’ve had it as long as they can remember, so they think it’s normal, they in fact don’t say anything for quite a long period of time. There’s so many levels of challenge, I wonder how rare it is – it’s certainly under-recognised.
Dr. Sonia Batra: Tell us about your work gaining, kind of, to bring attention to this?
Sierra Domb: Right, well it became evident to me after my search that there is currently not a cure for visual snow, so I am suffering just as much today as the day that I first started seeing visual snow. But I’ve learned to adapt and the only thing that’s changed, really is my outlook and my perspective. So I try to become my own advocate, because I realised there wasn’t a lot of awareness about this condition, and there were others like me, so I wanted to help people and hopefully raise awareness for visual snow. And that prompted me to start a charity: Visual Snow Initiative.
Dr. Travis Stork: And I think today as you mentioned more people than ever before will know what visual snow is here. Thank you for sharing your story with us, and Dr. Goadsby, thank you as well for sharing your expertise. We’re going to have more information about visual snow on our website: thedoctorstv.com.