AAN 2026 | Advances in understanding and treating Sunflower syndrome, a rare photosensitive epilepsy

So Sunflower has been an area of my complete obsession for the past nine years. I’d never heard of it nine years ago. It had really been lost in the medical literature and kind of we’ve been focused on that. It’s a very poorly understood, very rare epilepsy in which children will be drawn towards the sunlight and will wave their hand in front of their eyes. And it had been thought that children were doing this to provoke their own seizures because it’s very similar to the effect of the strobe light, which with people with photosensitive epilepsy can trigger a seizure. And that’s not true. We’ve actually been able to show that this is the seizure. And when we started really trying to understand this epilepsy better, we learned that it’s very refractory to our anti-seizure medications. They often don’t work. And so there’s a real need. And it’s impactful. Most of these kids are, other than having these episodes, which can occur hundreds of times per day, otherwise fine. You know, neurotypical, many of them very bright. But it’s a very impactful epilepsy for safety issues. Children have walked into the street doing this. Families don’t go on vacation. They don’t go out in the sun because of this. I even know of a family who built a subterranean home because of this to keep their child away from the sun. So we actually were able to do a study with fenfluramine a few years ago in IND and show that fenfluramine could be effective in treating Sunflower syndrome. And what led to that was when we were trying to understand what Sunflower syndrome was, there was actually a letter to the editor of the New England Journal of Medicine in 1983 by Jean-Éric Cardi and Henri Gastaut describing the effective use of fenfluramine in three children with self-induced photo-stimulated epilepsy. And the first was really met our definition for Sunflower syndrome. So we were able to show that that can be quite effective, which is important because, again, most anti-seizure medications are not. We also, through a family with Sunflower syndrome, were connected to an optometrist in the St. Louis area who has a history of treating other photosensitive epilepsies with colored contacts. He also had never heard of Sunflower syndrome, but now he’s treated probably over 60 patients with Sunflower syndrome with colored contacts. And we’ve been working very closely with him because since the medications don’t work, if contacts could, it would be quite helpful. And we found, we just published a paper showing the contacts are indeed effective at reducing the hand-waving episodes. It’s just that tolerability can be an issue because they’re quite dark. They make your iris look large and quite dark. So one of our kids plays the orchestra, has trouble seeing the music. People that use a lot of iPads in the classroom, it’s very difficult because of the contrast, but it’s cool that they can be effective therapy. So if anyone would have told me 15 years ago that I’d be using colored contacts to treat epilepsy, I would have thought they were crazy. And yet today in 2026, we’re using contacts to treat epilepsy.

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