Too Many with Epilepsy are Unaware of this Uncommon but Fatal Threat

(BPT) – For people with epilepsy—and for those who care for them—the side effects of the condition are well known. They know all about the seizures and they also know how best to care for themselves or their loved ones should a seizure occur. While the persistent possibility of a seizure is well known, many people living with epilepsy are unaware of another threat that, while uncommon, is fatal.

They are unaware of SUDEP.

What is SUDEP?

SUDEP stands for Sudden Unexpected Death in Epilepsy. It is an uncommon but fatal complication that kills one in 4,500 children with epilepsy and one in 1,000 adults with epilepsy each year. In many cases of SUDEP, an otherwise healthy person with epilepsy dies unexpectedly. And while SUDEP may seem to strike from nowhere, new research is available to help patients and their families reduce their risk.

The American Academy of Neurology and the American Epilepsy Society recently released a new guideline to help patients and their families better understand SUDEP and its risk factors. According to the guideline, the occurrence of generalized tonic-clonic seizures (GTCS), a type of seizure that involves the whole body, is one of the key risk factors for SUDEP. The guidelines also find that a patient’s risk of SUDEP increases as GTCS increases in frequency.

Likewise, seizure freedom from GTCS decreases a person’s risk of SUDEP.

Care guidelines for doctors, patients and caregivers

Given the clear connection that exists between the frequency of GTCS and their risk for SUDEP, reducing GTCS experiences remains the most effective way to reduce a person’s SUDEP risk.

For neurologists—the doctors who treat patients with epilepsy—this means increasing patient knowledge of SUDEP and letting people know that while the condition is uncommon, it can be fatal. This conversation can be difficult, but it is essential so patients can better understand their risks and how to protect their health. Actively working with patients who experience GTCS to manage their epilepsy therapies is the best way to reduce their seizure risk. Neurologists should also inform patients that seizure freedom, particularly freedom from GTCS—which is more likely to occur by taking prescribed medication regularly—is strongly associated with a decreased risk of SUDEP.

For patients, this report makes the conversations they have with their neurologist regarding their epilepsy treatment more important than ever. Patients must speak with their neurologist about their experiences and carefully follow the treatments set in place. Failure to do so could not only be seizure inducing, but life threatening. For those living with epilepsy and their caregivers, sidestepping the treatment simply isn’t worth the risk.

To learn more about SUDEP and the latest treatment guidelines available from the American Academy of Neurology and American Epilepsy Society, visit aan.com.