Friday, October 23, 2020

Today is SUDEP Awareness Day

 

“There are times when people with epilepsy die without warning and no cause is found.  This is known as Sudden Unexpected Death in Epilepsy or SUDEP.  The risk is low but real.  And although it’s a difficult issue to face, it’s important to consider when making lifestyle choices, so you can lower your risk of SUDEP.”- www.MakingSenseOfSUDEP.org

 

Today is SUDEP Awareness day.  Did you know that approximately one out of every 1000 people who have epilepsy die from SUDEP every year?  Last year Disney actor Cameron Boyce lost his life to SUDEP, bringing further awareness of the condition into the news.

The cause of SUDEP is unknown, but researchers continue to investigate the connection between seizures and their effect on cardiac issues and breathing. The condition shares many similarities with SIDS (Sudden Infant Death Syndrome.)

Risk factors for SUDEP include having frequent generalized seizures, particularly when they occur at night.  Males are more prone to SUDEP, as are people who have had epilepsy for more than 15 years and those who developed epilepsy before the age of 16.

It is important to be educated about SUDEP and to minimize your risks by seeing your neurologist regularly, taking medications on time, getting enough sleep, avoiding alcohol and other seizure triggers and making sure your network of family and friends are informed about your epilepsy and aware of what to do when you have a seizure.  If medications are not keeping your seizures under control, look into alternative treatments to achieve the best possible seizure-control.

 

Amanda’s neurologist has told her that she is at risk for SUDEP.  Stay tuned for a post about how her seizure-response service dog helps in the event of an emergency!

 

For further information on SUDEP you might visit the following websites:

www.dannydid.org

https://www.epilepsy.ca/sudep.html

https://www.epilepsy.com/learn/early-death-and-sudep/sudep

SUDEP.org

SUDEPAware.org

https://www.sudep.news/about-sudep

We can help!


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