SUDEP is an acronym used to describe when an epilepsy patient dies suddenly or prematurely without an identifiable reason. It is the most common cause of death among epilepsy patients, even though it is very rarely observed. There are an estimated 600,000 people in the United Kingdom with epilepsy.
The initiative is organized by SUDEP Action, in partnership with the Epilepsy Society and 80 other supporting organizations and patient groups. According to the Epilepsy Society, important factors that have the potential to increase a patient’s risk of SUDEP include:
- Convulsive seizures – particularly sleep seizures, when the person was alone at night.
- Age – studies show that 75% of SUDEP cases were recorded in patients younger than 45.
- The duration of the epilepsy diagnosis and age of onset – those whose seizures started before 16 years of age were at greater risks.
- Gender – there is a higher incidence of SUDEP in male patients.
- Low levels of anti-epileptic medication in the blood – from, for instance, not taking medication reliably, and;
Factors that were found NOT to pose extra risks included:
- Particular drug use, like that of carbamazepine or lamotrigine.
- Intellectual disability.
- Psychiatric illness.
- Brain lesions.
The online awareness-raising campaign was created to encourage epilepsy patients to take positive actions to manage their seizures, thus reducing their risk of SUDEP. Positive steps include:
- Taking your prescribed medication on a regular basis.
- Speaking to your doctor before changing anything in your treatment plan.
- Ensuring that you have regular doctor appointments and treatment plan reviews.
- Discussing any potential lifestyle changes – such as having a baby or going to university – with your appointed physician, to make a more informed decision.
- Avoiding over-consumption of alcohol and overuse of recreational drugs.
- Telling your doctor if you notice any changes in your seizures.
- Discussing your actual risk with your doctor to have a clear notion of what’s at stake. Not every epilepsy patient is at risk of SUDEP.
If you have any concerns around epilepsy and SUDEP, you may call the Epilepsy Society’s helpline (01494 601400) whether you are in the United kingdom or elsewhere. If you have been affected by an epilepsy death, you also can call SUDEP Action’s support team (01235 772852).