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

What’s Happening

Listen up: Jo-Ann Burns says her daughter Nicola wasn’t told about Sudden Unexpected Death in Epilepsy.

My daughter died in her sleep, with no warning 9 hours ago Save Marie-Louise Connolly Health correspondent, BBC News NI Save BBC Jo-Ann Burns says Nicola was a daughter and a best friend A woman whose daughter died from a condition linked to epilepsy has dropped the family feels “robbed” and “heartbroken”. Nicola Burns was 41 years old when she died in her sleep from a condition called Sudden Unexpected Death in Epilepsy (SUDEP). (we’re not making this up)

Her mother Jo-Ann Burns has dropped Nicola was not told about SUDEP, despite having lived with epilepsy for years.

The Details

She has told BBC News NI that epilepsy patients need to be warned they are at a higher risk of death and what they can do to reduce it. SUDEP has several warning signs, including uncontrolled and nocturnal sleep seizures, and affects about one in 1,000 people with epilepsy every year.

Nicola had not shown any signs of illness as a child but was diagnosed with nocturnal seizures in her 20s. Even after her diagnosis she did not show many signs of the condition, only rarely going to hospital after a seizure.

Why This Matters

Fear of epileptic seizures didnt stop me having children My son can now enjoy life: Children with severe form of epilepsy helped Epilepsy AI tool detects brain lesions doctors miss SUDEP: Patients need to be warned they are at a higher risk of death, says mum Jo-Ann dropped because of this they had become “too complacent” about the illness and the family would have been more wary if they had been made aware of the risk of SUDEP. Nicola was handling her epilepsy, taking her medication which was reviewed periodically but she nor us knew anything about sudden unexpected death. SUDEP is when someone who has epilepsy dies suddenly and no other cause of death can be found, according to the charity SUDEP Action.

Health experts are weighing in on what this means for people.

The Bottom Line

SUDEP is when someone who has epilepsy dies suddenly and no other cause of death can be found, according to the charity SUDEP Action.

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