'My epileptic daughter died in her sleep, with no warning'

'My epileptic daughter died in her sleep, with no warning' 31 minutes ago Share Save Marie-Louise Connolly Health correspondent, BBC News NI Share Save The "heartbroken" mother of a woman who died from a condition linked to epilepsy has said patients need to be warned they are at a higher risk of death and what can be done to reduce it. Jo-Ann Burns said her 41-year-old daughter Nicola, who had been diagnosed with nocturnal seizures in her 20s, was not told about Sudden Unexpected Death in Epilepsy . SUDEP has several warning signs, including uncontrolled and nocturnal sleep seizures, and affects about one in 1,000 people with epilepsy every year. At an inquest into Nicola's death in 2025, the coroner queried why SUDEP had not been raised with her and why an annual review by the South Eastern health trust hadn't taken place. In a statement to BBC News NI the trust said it wished to express its "deepest condolences" to the family and following a review, its neurology epilepsy lead has developed a comprehensive advice document which is now added to patient's clinical letters, including a section on SUDEP. Speaking to BBC News NI, Jo Ann said Nicola had so much more life to live and that her death had left them feeling "heartbroken". 'Fear of epileptic seizures didn't stop me having children' 'My son can now enjoy life': Children with severe form of epilepsy helped by new drug Epilepsy AI tool detects brain lesions doctors miss "We feel robbed, Nicola was handling her epilepsy, taking her medication which was reviewed periodically but she nor us knew anything about sudden unexpected death," Jo-Ann said. Nicola had not shown any signs of illness as a child and, after her diagnosis she did not show many signs of the condition, only rarely going to hospital after a seizure. Her mum said that because of this they had become "too complacent" about the illness. However she feels they would have been more wary if they'd been made aware of the risk of SUDEP. What is SUDEP? SUD...