For people who live with epilepsy and those who care for them, the word SUDEP is the one word that can strike fear into them.
Therefore the most natural reaction when this subject is approached is for them to switch off and shut down taking ignorance as bliss, if this is not acknowledged it will never happen to us!
And as tricky as this subject is we know that SUDEP CAN and DOES happen. So arming yourself with facts, knowledge and tools is key.
21 people a week die from SUDEP in the UK. (more than 1000 people a year) and research has shown that as many as 400 of these deaths could potentially be prevented, that’s nearly half!
So who is most at risk of SUDEP?
There is so much research globally into what causes SUDEP and if it is in any way preventable.
What we do know is that most deaths are caused by nocturnal seizures and when people are alone and most people are found lying on their front.
Although the precise cause of SUDEP is still largely unknown, studies have reported that SUDEP is associated with a combination of several medical conditions, including central or obstructive apnoea (breathing sleep disorders), pulmonary oedema (excess fluid in the lungs), dysregulation of cerebral circulation (disruption of blood flow to the brain), autonomic dysfunction (nerve damage), and cardiac arrhythmias (disruption of heart rhythm).
Over the past few months, there has been several new studies published worldwide and these studies show that people most at risk to be:
- Those diagnosed with epilepsy at a young age and continue to have seizures throughout their teen and adult life.
- Those diagnosed with certain genetic conditions that cause gene mutations such as Dravet. (read the full study below) https://dravetsyndromenews.com/2018/09/20/scn1a-gene-mutations-put-dravet-syndrome-patients-risk-sudep
- People with drug resistant or uncontrolled epilepsy
- Adults over the age of 20 (this could be down to associated ageing health risks to the heart, brain and respiratory system).
And new research from the epilepsy society also shows that people are most at risk of SUDEP in the 10 mins post-ictal (after a seizure has ended).
So taking all this on board what can we do to help safeguard against SUDEP?
When it comes to safeguarding yourself there are a few key things you can do:
- Know your epilepsy – Managing your condition is so important, SUDEP Action have a fantastic award-winning app called EpSMon which can help you self-monitor in between your visits to your doctor/ consultant or epilepsy nurse and is available for free on android and apple devices. https://sudep.org/epilepsy-self-monitor
- Make sure you have a good care network in place – Speak to your friends and family about your epilepsy. The more those closest to you understand your life and your condition, they can support you and pick up on any changes that could help safeguard you.
- Stay in regular contact with your epilepsy nurse or consultant – Even if your epilepsy is relatively well managed, make sure you stay in regular contact with your epilepsy nurse or consultant (at least once a year) that way you can keep them informed of any seizure activity you are having or anything that doesn’t quite seem right. They can help review your medication and ensure that your emergency protocol is still relevant and up to date.
- Use aides and technology to safeguard you – There are lots of tools available to help safeguard you. Anti-suffocation pillows can potentially help reduce the risk of suffocation during a seizure, especially if you sleep on your front, bed guards can help reduce falling from bed and becoming trapped in awkward positions or injuring yourself, Seizure dogs can detect and alert to the onset of a seizures. Some seizure monitors can also help safeguard you, in particular PulseGuard as it alerts to the clinical change in your heart rate at the onset of a seizure but also at the onset of respiratory or cardiac arrest which can lead to SUDEP.
- And finally get yourself and those around you trained in CPR!
Finally, we don’t know if we can prevent or reverse SUDEP, But what we do know is that by putting all of these safeguarding measures in place we can help preventable deaths in epilepsy. You can rest safe in the knowledge that you have tried everything in your power to safeguard your loved one rather than being left with the question of what if…
To help support towards further research into SUDEP please contact SUDEP Action
Email: firstname.lastname@example.org Phone: 01235 772850