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Your Epilepsy Does Not Define You

11/27/2018 Author: Loretta Boileau, Epilepsy Patient, Caregiver and Advocate
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I had my first seizure in seventh grade, from which I woke to see my English teacher and mother looking over me – a moment I call my “view from the floor.” I was 13 years old.

 

I’m lucky to be among the 66 percent of epilepsy patients who have found effective treatment for their condition. After my second seizure at age 19, my doctor prescribed a medicine that worked to control my symptoms, and to this day, I have been seizure-free.

 

Other members of my family have not been as fortunate. My youngest son, Daniel, was diagnosed with epilepsy at age 3, and while several treatments have helped, he suffers from between 150 and 300 seizures per month.

My two older sons were also diagnosed with the disease, and have since passed away from epilepsy complications, in what is known as “sudden unexpected death from epilepsy.”

 

My battle – and even more so my family’s battle – with epilepsy has changed me in ways I never would have imagined. I have become more assertive, even aggressive at times, in fighting for my sons’ needs, which are so often misunderstood by people outside the epilepsy patient and caregiver community. Today, I am a patient advocate, where I continue to fight for the 1 in 26 Americans who will receive an epilepsy diagnosis in their lifetimes. At this point, I would describe myself as a hopeful fighter, and I’m proud of who I am in this role.

 

As I look forward, I have two constant sources of hope. First, through my advocacy efforts, I have met many people in the research community and seen first-hand the amazing work being done to find new treatments, and possibly cures, for epilepsy patients. It is empowering to know there is an army of researchers every day looking for the next breakthrough discovery.

 

To these researchers, I want to say, “Don’t ever give up doing what you are doing, because we need you.” There is an entire patient population who would not be here – or whose lives would be severely diminished – without your work, and you are immensely appreciated. Time after time, when I took my son Daniel to the epileptologist, she always had one more solution, one more new trick to try. That wouldn’t be possible without the research community. We hardly ever see them, and we don’t know who they are. But because they are working, we have answers. And patients like my son Daniel have hope.

Additionally, I believe that discontinuing research or substantially reducing the time, money and effort put into R&D is simply unpardonable. I can unequivocally say that without innovative treatments, my son would not be alive.

We need to keep fighting and pressing onward, as there is still tremendous unmet need. I’m one of the 66 percent of epilepsy patients who found an effective treatment, but there are 34 percent for whom this has not been a reality, including Daniel.

 

My second source of hope has come from Daniel himself. Even though his seizures are not controlled, his treatments have helped tremendously. Today, I see him happy, living a life of quality, and a life in which he is well taken care of. To me, that provides huge satisfaction as a patient, but much more so as a parent.

 

To patients like Daniel, I encourage you to engage with life, starting with an acceptance of who you are. I often meet people with epilepsy who are afraid or ashamed to admit they are affected, but the first step to a fulfilling life is to love who you are. We are not epileptics – we are people who live with epilepsy. The best thing you can do is acknowledge this, understand the impact it has on your life, and then begin living your life to the fullest.