A Young Woman’s Journey with Jeavons Syndrome

This week on Seizing Life®, recent college graduate and CURE Epilepsy summer intern Kiley Flowers joins us to talk about Jeavons syndrome and share her personal journey with this rare form of generalized epilepsy.

Kiley Flowers first showed signs of epilepsy when she was in fifth or sixth grade but was not diagnosed until she experienced her first tonic-clonic seizure at the age of thirteen. Initially diagnosed with Juvenile Myoclonic Epilepsy (JME), Kiley was treated for JME over the next five years, until an epileptologist recognized symptoms of Jeavons syndrome, now known as Epilepsy with Eyelid Myoclonia (EEM). This new diagnosis resulted in a change of medication and improved seizure control. Kiley explains what Jeavons syndrome is and the signs to look for. She discusses how growing up with epilepsy impacted her education, social life, and mental health, and how she learned to cope during the difficult years of adolescence. She explains how receiving an accurate diagnosis helped her gain better seizure control and allowed her to achieve something she’d only dreamed of during the darkest days of her epilepsy journey, graduating from college. Kiley also discusses her recent internship with CURE Epilepsy, where she worked on a new initiative focused on EEM, and offers her advice for parents and caregivers in helping loved ones living with epilepsy.

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