March is full of awareness events. Yesterday was National Cerbral Palsy Awareness Day. Hemophilia Awareness Month is observed in these weeks. We just celebrated World Down Syndrome Day. And while every one of these diagnoses deserves attention, epilepsy poses unique challenges for those of us in special needs ministry. Like those with hemophilia, most people with a seizure disorder look just like any other average person. Also a crisis-driven disorder, epilepsy can catch both the diagnosed and those around them off guard. This makes “Purple Day” (Epilepsy Awareness Day) a perfect time to make sure your ministry leaders are educated and prepared.
Here are some insights to bring to mind:
- There are many different types of seizures. A seizure can vary from blank stares to the classic tonic-clonic we typically associate with epilepsy. Be certain to ask participants what their family member’s seizures ordinarily look like.
- Each person has different triggers for their seizures. The pervasive assumption that flickering lights always trigger an episode is not necessarily true. (Although children’s ministries, youth pastors and anyone running staged events ought to have photo-sensitivity on their radar.) Other triggers can include loud noise, stress, lack of sleep, hormonal changes, illness and more. This should motivate us to be specific on intake with participants, becoming sensitive to identifying individual triggers.
- While we want to build acceptance and remove fear, epileptic seizures can still be life-threatening. Church communities need to support these families with a sensitivity to the seriousness of this diagnosis.
- Of course, safety is of paramount importance. There are some excellent resources available at no cost. Two that we recommend are (A) The great basic training of NYU’s FACES (Finding a Cure for Epilepsy and Seizures) Seizure First Aid Video – You Can Do This; (B) The terrific, basic primer of Friendship Circle’s July 2012 blog post Seizures: What to do when you see one. Role playing after using each of these tools would be optimal for educating volunteers.