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What is Sunflower Syndrome?
Sunflower syndrome is a rare, epileptic disorder characterized by highly stereotyped seizures. During these seizures, individuals with Sunflower syndrome turn toward a bright light while simultaneously waving one hand in front of their eyes. This unique behavior is coupled with abrupt lapses in consciousness.
What causes Sunflower syndrome?
As of today, it is not known what causes Sunflower syndrome. However, the disorder is highly stereotyped and typically begins during the first decade of life. This suggests that there may be a genetic component. Currently, we are conducting research to identify and understand the underlying genetics involved with the disorder.
What are the symptoms of Sunflower syndrome?
Symptoms of Sunflower syndrome include an initial attraction to bright light, followed by seizure activity that includes episodes of hand waving and disruptions of consciousness. As stated above, these episodes typically start before the age of ten. The attraction to light often precedes the onset of handwaving episodes by days to months.
Patients with Sunflower syndrome can also experience other types of seizures. These include absence seizures and generalized tonic-clonic seizures. For some, tonic-clonic seizures occur after prolonged exposure to bright light and prolonged hand waving episodes.
How is Sunflower syndrome diagnosed?
There is currently no clinical or laboratory standard for diagnosing Sunflower syndrome. However, individuals with Sunflower syndrome have abnormal electroencephalograms (EEGs) with features consistent with generalized epilepsy. For this reason, your doctor may obtain an EEG.
How is Sunflower Syndrome Treated?
There have not been any clinical trials to investigate the effectiveness of treatments for Sunflower syndrome. For this reason, it is unknown if any anticonvulsant medications or treatments are particularly effective.
Some individuals with Sunflower syndrome and their parents report that providing shade from bright light (via a baseball cap, tinted sunglasses or welder’s glasses) can help reduce the frequency of hand waving episodes. Other individuals report that focusing on specific tasks while in the presence of bright lights can reduce the frequency of hand waving.
What Other Issues Do Patients Face?
The impacts of Sunflower syndrome have not been fully explored. Because individuals with Sunflower syndrome experience brief disruptions in consciousness, hand waving episodes can impact one’s ability to attend and learn. Furthermore, these disruptions in consciousness may pose a safety risk depending on the child’s activity at the time of the hand waving episode. Children who experience tonic-clonic seizures are at additional risk of injury at the time of those seizures.
Some patients also report experiencing anxiety, which may in part be caused by the inability to prevent or control hand waving episodes. Children with Sunflower syndrome may also experience added stress from clinicians, family members and friends who believe that the hand waving episodes are self-induced and under conscious control. Children often report that they are told to “just stop” causing themselves to have seizures.
Stigma Surrounding Sunflower syndrome
Sunflower syndrome was originally described as a self-induced photosensitive epilepsy. However, the “self-induced” designation may be inaccurate.
It was initially believed that individuals with Sunflower syndrome were consciously inducing seizures for attention or pleasure. This belief created a stigma around the disorder. As a result, people have adopted the belief that individuals with Sunflower syndrome can control their hand waving episodes.
Although some case studies provide anecdotal evidence to support this, the findings in scientific literature are not consistent. In fact, EEG studies have found that the misfiring of neurons in the brain or epileptiform activity start at the same time as the hand waving behavior. This suggests that the hand waving may in fact be part of the seizure, not the cause.
How Can I Help?
The Pediatric Epilepsy Program at the Massachusetts General Hospital is currently working to identify funding sources for current and future projects designed to understand and improve clinical care for children with Sunflower syndrome and are in the process of establishing a dedicated multidisciplinary Sunflower syndrome clinical program. If you are interested in donating, please visit our Sunflower syndrome fundraiser page or email firstname.lastname@example.org.
Under the direction of Elizabeth Thiele, MD, PhD, the Pediatric Epilepsy Program at MGH has initiated several projects to develop a better understanding of Sunflower syndrome.
Gene Identification: Because of the highly stereotyped characteristics of Sunflower syndrome, it is possible that there is a genetic component to the disorder. Efforts are currently underway to identify the specific gene/s that may be involved in Sunflower syndrome.
Clinical and EEG characterization: Sunflower syndrome is not well understood. The Pediatric Epilepsy Program at MGH is currently working to characterize the clinical features and EEG patterns of children with Sunflower Syndrome.
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