Living with Epilepsy

–submitted by Donna Hurd; photo by John Bonsett-Veal

Dr. Kristin Seaborg (left) with Club President Michelle McGrath

If asked, “What illness affects 1 in 26 people, 50 million people worldwide; greater than 100,000 soldiers coming from Iraq and Afghanistan; attributed to 1/3 of all sudden deaths in children?” Would your answer be: cancer, heart disease or diabetes? What if you were told that this illness contributes to $15.5 in indirect medical costs per year; more than 7 times higher than any other chronic disease, including diabetes and heart disease? The mystery is not in the disease, but in what is known about the disease and the number of individuals affected by it.

With 200,000 new diagnoses per year, Epilepsy is a neurological disease that affects individuals more than muscular dystrophy, multiple sclerosis, cerebral palsy and Parkinson’s Disease combined. It accounts for 50,000 deaths per year, but only accounts for one-fourth of research funding of all other neurological disorders.

So why don’t we talk about? The stigmas associated with this disorder would make the most confident person keep the secret to themselves. While the discussion has advanced beyond medieval thoughts of divine punishment for sinners and identification as witches, vexed with evil spirits (I hope), many continue to remain silent about this malady as a sense of shame continues to be invoked.

Our guest, Dr. Kristin Seaborg, presented a compelling argument for disclosure and discussion about this condition as it will encourage an open dialogue, dispel the sense of shame, and create a climate of discovery, not disdain.  Dr. Seaborg decided that she would not let Epilepsy rob her of her dreams and through her book: The Sacred Disease: My Life with Epilepsy, discloses her experiences with the disease and why this is a conversation we must have.

For more information about Epilepsy go to www.efa.org.

If you missed our meeting this week, watch the video here.