November is Epilepsy Awareness Month
Four years ago my daughter, Paige Nagy died from epilepsy/SUDEP. She was just 21 years old with her whole life ahead of her but now our family will only be able to just wonder what things she would have accomplished. Would she have been married and had children yet, had a great job? We’ll never know. Our family knew she had epilepsy and did what we were supposed to do by keeping doctor appointments and making sure she took her medications but sadly we were never informed by any medical professional that she could die. Discussions need to be had with families upon the diagnosis of epilepsy so they are as informed as they can be about all aspects of epilepsy. SUDEP (Sudden Unexpected Death in Epilepsy) is not discussed at all with families. Most of us who have lost loved ones to SUDEP didn’t find out about it until it was too late.
Epilepsy or seizures are caused by disturbances in the electrical activity of the brain. Over 2 million people in the United States have epilepsy and 1 in 26 people in the U.S. will develop epilepsy at some point in their lifetime. There are many different types of seizures but the most noticeable is a grand mal or tonic clonic seizure. This is where a person has full body convulsions and typically loses consciousness for a brief period. If you witness someone having this type of seizure, you can help! Time the seizure, cushion the persons head and move any objects that may harm them during the seizure. Do not put anything in the persons mouth and do not restrain them. Do place them on their side and stay with them until the seizure ends and offer assistance if needed. Check for ID showing they have epilepsy. Call 911 if the seizure lasts more than 5 minutes, if you know the person has never had a seizure before or if the person has injured himself or herself during the seizure.
You probably know people who have epilepsy and you may not even know it because there is such a stigma associated with this disorder. Epilepsy is not contagious, you can’t “catch” it from being around someone who has it. Educating yourself is a great way to help people with epilepsy so you can help educate others and support and understand this condition more. For more information please contact the Epilepsy Association of Western/Central PA (www.eawcp.org). They offer educational materials, classes, camps and seizure detection aids just to name a few of their services.
Hopefully one day there will be a cure for epilepsy so other families don’t have to go through what my family has by suffering the loss of a loved one.
Julie Nagy
Uniontown