Something Personal-Epilepsy Awareness

As most of you know, we have an 11 year old daughter. She is beautiful beyond words. She has epilepsy. November is International Epilepsy Awareness month and I feel the need to do my part to make people aware. Epilepsy is not just falling on the ground with convulsions and then getting back up to carry on with whatever was taking place. No, epilepsy is much more than that. You see, our daughter is unable to walk, unable to talk, and unable to care for herself. She has what is known as Lennox-Gastaut Syndrome, a specific type of childhood epilepsy that is very hard to control. It started out as infantile spasms known as West Syndrome and it went completely misdiagnosed as Colic until she had her first "grand mal" or tonic clonic seizure at the age of 13 months. According to the Centers for Disease Control and Prevention, epilepsy affects 2.2 million Americans. It affects 65 million people worldwide. Why is there so little known about epilepsy? Allow me to give you a bit of history. In 400 B.C. the Greek physician Hippocrates wrote the first book on epilepsy, On The Sacred Disease, negating the idea that epilepsy is a curse or a prophetic power. He proved that it was a brain disorder. In 1494, a handbook on witch-hunting, Malleus Maleficarum, brought a wave of persecution and torture, leading to the death of more than 200,000 women. Written by two Dominican friars under papal authority, the book identified the presence of seizures as a characteristic of witches. In 1912, two independent teams of chemists created phenobarbital under the name Luminal. Phenobarbital is the oldest AED in common clinical use. In 2000, a landmark conference, 
"Curing Epilepsy: The Promise and the Challenge", organized by the Epilepsy Foundation of America, set bold goals for tomorrow's treatment including prevention and cure of epilepsy; no seizures or side effects for those with the conditions; and findings to prevent epilepsy acquired from injury, infection or errors of development.

Now let me put it to you in terms of our everyday life, living with epilepsy. We sometimes go for days with no seizures. We cherish those days, and nights because sleeping all night long without seizures is rare. Then we have times when our daughter will seize all night long and never wake up in between them. A prolonged seizure, or not regaining consciousness between seizures is called Status Epilepticus, or in our world Status. We usually end up in the hospital on those. And Status usually causes our daughter to lose whatever skills she had been working so hard on to gain. It's a one step forward and two steps back kind of thing. And the way the injured brain reacts to what we view as normal emotions is a whole different story. Our daughter will laugh when there is nothing to laugh about. It's her injured brain reacting. Or she will appear upset and moan when she is really happy. Again, it's her injured brain reacting. This is called pseudo bulbar affect. We strive daily to make it a good day for her. She goes to school, fifth grade. And she loves being around other children. She loves to watch and hear them play and laugh. She loves to get the giggles and give them to you. She loves to squeeze your fingers. And at almost 12, she loves to roll her eyes. But we never know when we will enter another storm.

I don't tell you these things for sympathy. I tell you these things because we need to make people aware of epilepsy and what it's really about. We need more awareness because more awareness will bring on education. More education will bring on more funding for research. More funding for research will bring on a possible cure for epilepsy some day. This is what the 65 million people worldwide living with epilepsy need. This is what my daughter needs. A cure for epilepsy. If you have read this far, I thank you. Please educate yourself and others about epilepsy. My family thanks you. My daughter thanks you.