The Epilepsy Foundation, formed in 1967, is the premier non-profit foundation dedicated to helping not only the nearly 3 million people with epilepsy but those with other seizure disorders. They recognize the prevalence of PNES in the overall population who are struggling with these seizures and are working to increase awareness and help those who are seeking a proper diagnosis and treatment.
Many people who seek help at epilepsy centers are eventually diagnosed with psychogenic nonepileptic seizures (PNES). They are then generally told to seek psychiatric treatments. The Epilepsy Foundation is taking steps to help those with PNES find the best care. They have plainly stated that PNES are “not under voluntary control” which is helpful to those with these seizures. They have in some cases been told that their PNES are either fake or a sign of weakness.
Let me say that although PNES are primarily a psychiatric disorder it is the epilepsy specialists and the Epilepsy Foundation who have taken the lead in helping PNES patients. They are to be commended for this and I encourage all who are struggling with PNES to visit the Epilepsy Foundation website and learn about all types of seizures, including PNES, and the support and resources that are available. Regardless of the cause or type of seizures we all need to help bring awareness and begin to actively change the public’s understanding of the debilitating effects of epilepsy and PNES.