Health & wellness

Epilepsy - My Story

By Angie May | Haute Is Contributing Writer

Life works in very mysterious ways. You could be leading a very typical, happy life until one day when something completely unexpected happens and in that moment everything changes and a brand new chapter of your life begins. In 2011 life was wonderful. Our daughter Madison was a very happy, healthy and busy two year old little girl. I was working for an experiential marketing firm in a career I absolutely loved. My husband John and I both traveled for our jobs but loved spending time together and with Madison, our idyllic family life. One night in October 2011 we put Madison to bed like every night prior and we went to bed ourselves. Since she was still so little and at the time we were living in a bungalow style home we had a video monitor in her bedroom. Little did we know this video monitor would be the most valuable item in our home, because that night it saved Madison’s life? In the middle of the night we heard a strange noise on the monitor and looked to see Madison face down in her bed shaking. We ran to her room to find her completely unresponsive, jaw clenched, eyes unfocused and her little body jerking, what was happening to our baby? We immediately called 911 and in minutes the police and paramedics were in our living room saying the word “seizure”, “she’s having a seizure”. We were completely dumbfounded, she was healthy, normal birth, perfect development, in fact she was an advanced learner, how could this happen to her? Little did we know anyone can have a seizure at any point in their life for a number of different reasons but also for no reason at all. This is where our epilepsy journey began.

Epilepsy is the general term for a variety of neurological conditions characterized by recurrent unprovoked seizures. A seizure is a brief disturbance in the electrical activity of the brain that causes temporary changes in movement, awareness, feelings, behavior, or other bodily functions. Epilepsy is the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer’s disease. About one percent of Americans have some form of epilepsy, and nearly four percent (1 in 26) will develop epilepsy at some point in their lives. The number of Americans who have epilepsy is greater than the numbers who have multiple sclerosis, Parkinson’s disease, and cerebral palsy combined. 10% of Americans will have at least one seizure at some point in their lives. Epilepsy is prevalent among other disability groups such as autism (25.5%), cerebral palsy (13%), Down syndrome (13.6%), and intellectual disability (25.5%). For people with both cerebral palsy and intellectual disability the prevalence of epilepsy is 40%. Anyone can develop epilepsy at any time. Incidence is highest among the very young and the very old.

After Madison’s first seizure she started medication and was treated by a neurologist. She went on to have a few more Tonic Clonic seizures called “break through” seizures before we had her medication dosed correctly for her to be controlled. A Tonic Clonic seizure formally called Grand Mal is the type of seizure people typically think of when they think of epilepsy as it can be very intense with body jerking movements and many physical changes and usually lasts just a few minutes before the person returns to normal consciousness. There are about 30 different types of seizures and over 60 different types of epilepsy. In fact people often go undiagnosed for many years because they do not realize that they are experiencing seizures. In our case it was very clear what was happening to our daughter and we were committed to get answers.

Shortly after Madison was diagnosed with Epilepsy we were desperate for more information and to learn about what was in store for Madison and our family. We attended an “open house” event at the Epilepsy Foundation of Michigan offices in Southfield, MI and we were immediately embraced by their staff and others in the epilepsy community who were experiencing exactly what we had been going through. The connection to the Epilepsy Foundation of Michigan is where this new journey took a positive turn. We quickly learned that Madison was on the wrong medication and through the help if the foundation we found an Epileptologist, a doctor who specializes in epilepsy and things started to feel somewhat manageable. We began to get involved with the programs and events hosted by the foundation and we started a team for the annual Metro Detroit Summer Stroll for Epilepsy.

In 2012 our youngest daughter Ashlyn was born and our life felt complete. We were back to all activities, family vacations, life as normal for many years. Then in 2016 our life once again took a turn when at the age of just 3 years old Ashlyn suffered from a life threatening seizure that felt like a reoccurring nightmare. Now our fight against this horrible disease of epilepsy became twice as strong. The main positive factor at this point was that we knew what to do this time, we were prepared for this diagnosis and we had many more resources and more information in order to help her live with epilepsy

Having more than one person in a family with epilepsy might seem rare but it is not uncommon. There can be a genetic component to the disease so the prevalence of having more than one family member with epilepsy is often higher. Some types of epilepsy run in families and are both inherited and genetic. Not all epilepsies that are due to genetic causes are inherited. In general, if a person’s mother, father or sibling has epilepsy, their risk of developing epilepsy by the age of 40 is less than 1 in 20 and the likelihood of inheriting epilepsy may differ significantly if a person has a relative with a known genetic epilepsy diagnosis.

Our focus now is on education and advocacy. We find it imperative to tell anyone and everyone about our story in order to normalize the disease and inform anyone who has contact with our girls or persons epilepsy on seizure first aid. The Epilepsy Foundation of Michigan has a community education team who will go into a school, workplace or any other public location to train the staff, teachers, etc. on seizures, seizure emergencies and rescue medication protocols. Additionally, it is our goal to erase the stigmas associated with the disease. A seizure can be very scary for anyone who witnesses it but if you are informed on how to help you too could possibly save someone’s life.

Now 9 years into this disease we are deeply involved with the Epilepsy Foundation of Michigan. I am the Vice Chairperson of the Board of Directors for the Foundation, we have a robust Summer Stroll team and we have raised over $200,000. I am also the co-chair for annual charity gala called the Toasting Hope Tasting Event which is a beautiful and exciting night filled with food and beverage tasting pairings, live and silent auctions, a live band and more occurring every September. For all the things this disease has taken from us, somehow it has given us an incredible community of friends and resources and we have made the most of this new chapter of our life.

If you have someone in your life that has had a seizure, has been diagnosed with epilepsy or has a family member in need of support, please reach out to the Epilepsy Foundation of Michigan. If you would like to get involved, volunteer or simply attend any of their exciting events throughout the year please check them out online www.epilepsymichigan.org or Facebook, Instagram and Twitter.