Community     May 31, 2016

SUDEP Awareness Day

Today is SUDEP awareness day. For those of you not familiar with this acronym, it stands for Sudden Unexpected Death in Epilepsy. There are around 600,000 people with Epilepsy in the UK and sadly around 600 people die unexpectedly each year after a seizure. SUDEP Action is a charity at the forefront of raising awareness of the situation and are the driving force behind SUDEP awareness day.

Causes of SUDEP

Research into the causes of SUDEP is ongoing and is still not completely understood by healthcare professionals. What is known however is that some severe seizures can alter the heart rate as well as breathing to the extent that both stop altogether.

Statistics show that those at most risk are people who have uncontrolled generalised Tonic Clonic seizures. Children appear particularly at risk with SUDEP accounting for 34% of all sudden deaths in young people. According to Epilepsy Action the following elements can contribute to a higher risk factor is suffering SUDEP:

  • Not taking epilepsy medicines as prescribed
  • Having seizures that are not controlled by epilepsy medicines
  • Having sudden and frequent changes to epilepsy medicines
  • Being a young adult (in particular male)
  • Having sleep seizures
  • Having seizures when alone
  • Drinking large amounts of alcohol

Preventing SUDEP

SUDEP Action are highlighting some simple ways to help reduce the risk of SUDEP with the strap line “Be Smart Stay Safe:

  • Keep a seizure diary to help avoid triggers for your seizures
  • Consider using an alarm if you have night time seizures
  • Take medication regularly as prescribed.

Additionally Epilepsy Action suggests the following:

  • Always take your epilepsy medicines as prescribed.
  • Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first.
  • Make sure that you never run out of your epilepsy medicines.
  • Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines.
  • If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery.

If your epilepsy is very difficult to control, ask your specialist if you could be referred to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.
Alarms for Epilepsy

There are a range of useful alarms that as SUDEP Action point out can help reduce the risk of SUDEP.

You can find a good selection at Epilepsy Alarms who specialise alarms such as the Emfit and Alert-it bed sensors, plus the new Epi-Care wrist worn sensor.

SUDEP Action

If you would like to support SUDEP Action in their amazing work then please text SDAY01 £3 to 70070.

Need some help?
Here are some helpful links.

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