The Best SUDEP Awareness Advice?
Bring it out of the shadows.
As part of SUDEP Awareness Day on 23rd October our team is on a mission to raise as much SUDEP Awareness and supporting those living with epilepsy. We’ve dedicated this month’s blog and social media content to raising SUDEP Awareness and encourage as much online conversation about it as possible. So please SHARE this onwards to help educate the world with us!
In the UK there are more than 500 Million people living with epilepsy, around 600 hundred people per year die prematurely to SUDEP. As shocking and devastating as SUDEP is, in most cases it is avoidable with the right knowledge and support. The best SUDEP Awareness advice is, to bring it out of the shadows together and support SUDEP Awareness Day!
What Is SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy it is when a person with epilepsy dies suddenly and prematurely when no other cause of death can be found.
SUDEP affects around 600 hundred families across the United Kingdom per year. Although low when compared to the total population it still requires all of our attention and action to prevent any loss of life. That’s why it so important we raise awareness together for SUDEP Awareness Day.
Why Does SUDEP Happen?
Researchers are still investigating the causes of SUDEP and it is unlikely there is a single cause. During seizures, people witnessing may often see a change in an epileptics breathing or heart rhythm due to the brains changed influence on these organs.
Normally, this is not a problem but if more serious changes occur for example, a major drop in oxygen levels in the blood, then this might be a trigger for SUDEP.
Another possibility is that there is a genetic link between seizures and heart rhythm abnormalities. Advances in research mean that as a united society against SUDEP, we are getting closer to identifying the critical risk factors.
What are the Risks?
An absolute cause(s) of SUDEP is unfortunately, not known. Like cot deaths, no one can say whether or not a person is individually predisposed to SUDEP. ?We need further medical research in this area.
?SUDEP has been shown to be connected with seizures, particularly tonic-clonic (convulsive) seizures. The exact cause is not known and there may be no single explanation. ? – source Epilepsy Org?
People with absence or myoclonic seizures are NOT known to have increased risk for SUDEP. ?In the general population of people living with epilepsy the risk of SUDEP is 1:1000 (similar to smoking 10 cigarettes a day).
What increases Risks?
It is recognised that certain high risk contributions can increase the risks such as;
- Severe convulsive seizures can increase risks to between 1in50 to 1in300.
- People who have frequent convulsive seizures, whose severity and frequency is such that they are being considered for surgery.
- Lifestyle changes such as, abrupt changes in medication, not taking medication as prescribed, stress, insomnia and/or anxiety.
- Excess drinking &/or taking illegal substances
- While in children SUDEP is NOT a major factor, in later life there is higher risk for those who have developed Epilepsy under the age of 16.
- Having had seizures for more than 15 years is also recognised as increasing the risk of SUDEP
All risks are individual and should be discussed with your health care professionals.
?Recognising the risk is only of value if there is something
that can mitigate that risk.
The Guardian Monitor is our most advanced epilepsy monitor on the market?
-?Tony Bullars, Sales Director, Alert-iT Care
Can Safety Devices and Monitors Help?
In short, absolutely our monitors can assist with reducing the risks of SUDEP for your loved one and/or family.
Over 25 years of experience in engineering and manufacturing alarms and monitors means our team has designed a highly sensitive Bed Movement detection sensor plus technology that provides vital insight data for your health care professionals and family in monitoring Tonic-Clonic and Tonic epilepsy.
The Guardian Monitor can be applied to the most demanding situations, an intelligent tool in conditions where it can monitor all the ?normal? seizure signs for Tonic/Clonic, Enuresis, Apnoea and Shouting. Capable of analysing the size and frequency of those with Tonic/Clonic and Tonic only seizures.
A learning mode allows the unit to record the normal movement activity overnight to establish the safe criteria. In professional care facilities the monitors alarms can be automatically logged into the Ip-iT Logging Unit to show time and date and duration of seizure activity.
Download your FREE brochure guide here.
Watch Sinead?s amazing story of triumph with her Epilepsy and our Companion Monitor by her side.
For more information on our peace of mind monitors contact us at Alert-iT Care.
Some more valuable information
Besides taking Anti-epileptic drugs (AEDs) consistently (every day) and around the same time. We wanted to introduce you to some other amazing organisations that help gain control over seizures.
A Smartwatch: If you have difficulties in remembering your medication schedule (lack of sleep and fatigue being the main contributors) Why not invest in a SmartWatch? A brilliant wristwatch that not only detects seizure movements but interactively sends reminders to take medications on what days, what type and at what times. Handy right!
Stylish Seizure Diary: Keep a daily record of when your seizures happen. This will help track any patterns to your seizures. We support a brilliant blogger called Louise. She creates some of the best, stylish seizure diaries we?ve come across. You can download for FREE here.
Anti-Suffocation Bedtime Pillow: One organisation that we are particularly proud to direct your attention to is Epilepsy Sucks UK ?this charity has a very special heart, it?s core founders are all women who have children with epilepsy and their views on epilepsy? ??It sucks harder than a Dyson in a black hole!? These women work to raise funds to help manufacture Anti-Suffocation pillows that help lower the risk of SUDEP.
Now combine their angel pillow with our Guardian Monitor, well that?s a mighty strong force protecting your loved one.
For further information about any of the article sources and/or organisations, please see below links. To raise your awareness and support for SUDEP Awareness Day on 23rd October, please donate here and SHARE this article onwards.
- Source Epilepsy Org https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy
- Upon A Sunshine ?http://www.uponasunshine.co.uk/
- Epilepsy Solutions http://epilepsysolutions.co.uk/
- EpilepsySucks UK http://esuk.uk.com/
- SUDEP stats?https://sudep.org/epilepsy-deaths
- SUDEP Awareness https://sudep.org/sudep-awareness