SUDEP awarness saves life
Sally was diagnosed with epilepsy as a child and suffered uncontrolled epileptic seizures.
Living with uncontrolled epileptic seizures was difficult enough but it brought greater risks after the birth of her first child.
After losing precious sleep at night to feed the baby Sally was exhausted, leading to more frequent seizures. She explained that: “The more seizures I had the more our quality of life deteriorated. I knew that the key to improving our quality of life was to get better medical management for my epilepsy. Each time I saw the general neurologist I asked for referral to an epilepsy specialist neurologist but it was not until after the birth of our second child that the referral happened.”
Sally added “I still clearly remember sitting in the consultation room opposite the expert epilepsy neurologist with my husband and two children. It was the first time I had heard of SUDEP.”
Sudden Unexpected Death in Epilepsy (SUDEP) is the term used when a person with epilepsy dies without warning and where the post-mortem fails to establish any other cause of death. About 500 of 1150 seizure-related deaths each year in the UK are SUDEP.
Sally’s epilepsy specialist neurologist was open with her and told her she was at risk of SUDEP unless he found a way of controlling her seizures which were not responding to anti-epileptic medications. Sally said: “Despite this frightening information I left feeling confident that he would do tests to see if there were other treatment options to stop my seizures and empowered with the knowledge of SUDEP.”
Sally underwent different tests to see if brain surgery would be safe and effective for her. In the meantime she had to look after herself and continued taking her medication. She partnered with the health care team so that she could make an informed decision if the epilepsy specialist neurologist offered her an operation.
Sally was later offered an operation. It was not risk free but she had plenty of opportunity to discuss the risks and benefits with the team. There was a small chance she could have a stroke, lose a field of vision or have more difficult mental health issues. The benefits were not having any seizures at all and driving a car. Throughout, Sally was aware that she could die of SUDEP if she chose not to go ahead with the surgery and if the operation was successful she would have minimal risk of SUDEP.
“The operation was completely successful and stopped all my seizures without any detrimental effects. Being seizure free enabled my life to move on.”
Sally created Epilepsy Awareness Ltd, an epilepsy specialist training company to use her personal experience to improve the understanding of the epilepsies.
Sally previously managed the Education and Awareness project at Epilepsy Bereaved, now SUDEP Action. She said “I met many people bereaved by epilepsy. Some had not heard of SUDEP until after a sudden death. All wished they had known of the risks beforehand.”
Sally added that Knowing that she had a right to see a specialist epilepsy neurologist within the NHS with more clinical expertise and experience than the general neurologist was valuable; and understanding her own type of epilepsy helped her to make choices and be more in control.