Sudden unexplained death in epilepsy is the most common cause of death among those suffering from the neurological disease. It has an incidence of about one in a thousand per year
Can epilepsy kill you? Unfortunately yes, for many reasons. People who suffer from it have a higher risk of mortality Compared to others. Death can be linked to the underlying disease (genetically determined metabolic diseases, brain tumors) or to seizures (clinical picture of “status epilepticus”, drowning, suffocation from inhaled food, head trauma). There is also an increased risk of suicide among patients. Among the deaths caused by seizures, explains the “Guide to epilepsy” of the Lice (Italian League against epilepsy), it deserves a special mention sudden and unexpected death (la cosiddetta «sudden unexplained death in epilepsy», Sudep) which is the most common cause of death related to epilepsy. It strikes one in a thousand patients with epilepsy each year (about 50,000 a year worldwide).
It can occur in sleep
The risk of Sudep varies in relation to the characteristics of the patient: it is low if the diagnosis is recent and if the therapy is effective, greater in patients who are severely drug resistant and who have very intense and prolonged seizures. The most important risk factor for Sudep appears to be the high frequency of seizures, in particular convulsive ones (tonic-clonic seizures); this suggests that Sudep is a phenomenon correlated precisely to the consequences of the crisis, probably ad cardiorespiratory changes. Sudden death occurs more frequently in sleep. To try to prevent it, the correct assumption of the therapy is essential, in order to obtain the best possible control of the crises.
The case of Cameron Boyce
In 2019 Cameron Boycestar on Disney Channel and the film «Descendants», he died of an epileptic seizure: he was 20 years old. In an interview, his parents revealed that Cameron had his first seizure at 16 and that in his entire life he had only had five. occurred in sleep. After his death, his parents created the Cameron Boyce Foundation, with the aim of funding research on epilepsy and Sudep. Drug resistance affects about 30% of people with epilepsy (drugs are not effective for seizure control), but it is estimated that 15-20% of drug-resistant patients could benefit from a neurosurgical interventionwith the aim of removing the part of the brain responsible for the seizures.
The case of Robby Lee
A year before Cameron Boyce, he died at 24 Robby Lee, brother of Amy Lee, co-founder and frontwoman of the metal band Evanescence. Robby suffered from a severe form of epilepsy since he was 7 years old. “We have always known that our time together was precious: he loved every day as if he were the last,” wrote the singer on her social networks, announcing the death of her brother. In 2005 Amy Lee collaborated with the Epilepsy Foundation for a campaign called «Out of the shadows», with the aim of spreading more awareness about epilepsy.
The diagnosis of epilepsy is very difficult to accept, especially by a young person, and can lead the patient to mental symptoms of anxiety and depression. Symptoms that can negatively affect the quality of life, even more than epilepsy itself. There is a risk of a vicious circle that is difficult to break, which sometimes makes psychotherapeutic interventions or specific pharmacological treatments appropriate. The main difficulty is accepting epilepsy, a disorder generated by a malfunction of the brain, with a sudden and unpredictable onset but which, apart from crises, is often compatible with a normal life. It is essential, at the time of diagnosis, that the patient receives detailed information on the characteristics of his type of epilepsy, so that he adheres to treatment.
March 28, 2023 (change March 28, 2023 | 06:47)