Today, March 26th, is International Epilepsy Awareness Day. Epilepsy is a disorder that results from the generation of electrical signals inside the brain, causing recurring seizures. Seizure symptoms vary. Some people with epilepsy simply stare blankly for a few seconds during a seizure, while others have full-fledged convulsions (Mayo Clinic). March 26th is also known as Purple Day, which was started in 2008 by Cassidy Megan, where you wear purple in support of those with epilepsy disorders. (Visit the Purple Day website)
There are many varieties of epilepsy disorders. A (fortunately rare) type of epilepsy is Dravet Syndrome (pronounced dra-vay). Dravet syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a neurodevelopmental disorder beginning in infancy and characterized by severe epilepsy that does not respond well to treatment. Estimates of the prevalence of this rare disorder have ranged from 1:20,000 to 1:40,000 births, though the incidence may be found to be greater as the syndrome becomes better recognized and new genetic evidence is discovered. It is thought to occur with similar frequency in both genders and knows no geographic or ethnic boundaries (IDEA League). There is no cure.
Sudden unexplained death in epilepsy (SUDEP) has had a major impact on the Dravet community causing the loss of several children in recent months. With SUDEP, people with poorly controlled epilepsy have a small risk of sudden unexplained death. Overall, less than one in 1,000 people with epilepsy die from SUDEP, but it's more common among people whose seizures aren't controlled by treatment. The risk of SUDEP is particularly elevated when generalized tonic-clonic seizures are frequent.
Compared to other diseases and disorders, epilepsy receives little media and monetary support. Part of Purple Day is to bring attention to the disorder. Please wear purple in support today and explain to your family and friends why you are doing so.
Epilepsy Facts to share:
- Anyone, at any age, can have a seizure.
- 1 in 10 people are expected to experience some type of seizure in their life.
- There are well over 40 types of seizures.
- You should NEVER put anything in the mouth of someone who is having a seizure.
- You can't swallow your tongue during a seizure.
- An average convulsive seizure will last from 1 to 3 minutes...if it is a first time seizure or if the seizure extends beyond 5 minutes...call emergency services immediately.
- If a person goes into status...this is when someone is seizing without a break between the seizures...call emergency services immediately.
- Not all seizures are Epilepsy.
- Not all seizures can be controlled by medication.
- Not all seizures are convulsive.
- Epilepsy is NOT contagious.
- People with Epilepsy can have a very high I.Q.
Please read the stories of the children and their families who have been affected by epilepsy and Dravet syndrome in particular:
IDEA League: Our Stories. Reed's story, the final one, is heartbreaking.
Epilepsy Outreach: Jennifer's story. This one particularly hits home for me because I know the family and adore this spunky little girl.
Further resources:
CURE: Citizens United for Research in Epilepsy
IDEA League (Dravet Syndrome)
