Understanding the Challenges of Epilepsy
Education & Research Industry thought leaders share what is often forgotten about an epilepsy diagnosis and how understanding a patient’s needs can be challenging.
What do you believe is the biggest challenge when it comes to diagnosing patients with epilepsy?
Eli Mizrahi: Understanding a patient’s concerns can be a challenge. There are a variety of clinical events which may be episodic but may not be seizures. Epileptic seizures present in a wide range of ways. These need to be explored through a detailed discussion with the patient and family to arrive at an accurate diagnosis.
Nathan Minnich: Knowing if a person is having a seizure and diagnosing the type of seizure or epilepsy syndrome can be difficult. One challenge to proper diagnosis is the fact that there are many other disorders that can cause changes in behavior and can be confused with epilepsy. Understanding what happens during a seizure is one of the most important pieces of information to develop a proper diagnosis. One challenge with collecting this critical information is that seizures rarely happen in a doctor’s office or in the presence of a health care professional. Therefore, the diagnosis may be based on third-party accounts of an event with little supporting information. In addition, one in three people with epilepsy in the U.S. have drug-resistant epilepsy. However, most of those patients are not properly diagnosed and rarely receive treatment beyond medications, despite the fact that treatments like VNS Therapy® are available and have been specifically designed for this type of epilepsy.
What is the most encouraging advancement you have noticed improving the lives of those struggling with epilepsy?
EM: There are two important advancements. One is the emergence of a new generation of anti-seizure medications that improve seizure control, limit side effects and make it easier for patients to follow treatment. The other is an increased awareness of epilepsy as an important public health concern and an increasing openness of patients and families to talk about their disorder.
NM: The latest advancement in drug-resistant epilepsy treatment was recently approved by the FDA. This groundbreaking approval was for the new VNS Therapy Programming® System, which features a wireless wand and new user interface on a small tablet, and the SenTiva™ generator, which is the smallest and lightest responsive therapy for epilepsy patients as young as four years of age. Together, the components offer patients with drug-resistant epilepsy a physician-directed customizable therapy with smart technology and proven results to reduce the number of seizures, lessen the duration of seizures and enable a faster recovery.
Much has been documented about the lack of funding for epilepsy compared to other disorders. What do you believe can be done to change this?
EM: We can emphasize that epilepsy is an important public health concern that has broad implications not only to those with the disorder, but also [their] families. We can also emphasize that understanding epilepsy at a basic science level allows us to further understand the brain in ways that will help us combat a wide range of neurologic disorders.
NM: Greater disease awareness and education are critical to transforming not only the funding but also the treatment outcomes for millions of Americans. The faster we can provide education that hope does exist, the better. Every day in the U.S., 30 children will experience seizures for the first time and ultimately will not be able to control the seizures with medication alone. That means every year, more than 10,000 children under 18 years old with drug-resistant epilepsy will face the consequences of seizures, including head trauma, ER visits, fractures and hospitalizations.
If you could give one piece of advice to someone recently diagnosed with epilepsy, what would it be?
EM: Continue living your life and do not allow the diagnosis of epilepsy to define you. Learn all you can about your specific type of epilepsy. Work with your health care provider to become seizure free with no adverse side effects from medications. For most patients, these are achievable goals. Continue to talk about your diagnosis with your health care provider and family.
NM: Get educated about epilepsy, and know that you are not alone and that there is hope. This begins with talking to a neurologist and epileptologist and visiting websites like www.SeizureControl.com, www.Epilepsy.com and www.VNSTherapy.com to learn more about treatment options available. Everyone who has epilepsy — or is touched by epilepsy — should also reach out to their local Epilepsy Foundation organization. Whether it’s for yourself, a family member or friend, it’s important to become an advocate and learn as much as possible about this condition that affects more than 3.4 million people in the U.S., according to the Centers for Disease Control and Prevention.