The Epilepsy Foundation of Greater Cincinnati and Columbus has changed its name to Epilepsy Alliance Ohio. It’s one of the founding members of Epilepsy Alliance America. The name is new but the mission to provide support, resources and hope to Ohioans living with epilepsy remains unchanged and the top priority. Kathy Schrag, executive director of Epilepsy Alliance Ohio, provides insight into the disorder which affects approximately 126,000 Ohioans.
HealthScene Ohio: What was the catalyst for The Epilepsy Foundation of Greater Cincinnati and Columbus changing its name to Epilepsy Alliance Ohio?
Kathy Schrag: Epilepsy Alliance Ohio has been in existence since 1954 and provides programs and services to people in our community affected by epilepsy. Over the past few years, our Board of Directors felt the mission of Epilepsy Foundation of America was changing and that our local mission was no longer in alignment with the National Organization. Therefore, in July of 2018, we disaffiliated from Epilepsy Foundation of America to become Epilepsy Alliance Ohio. We are a proud founding member of Epilepsy Alliance America, along with eight other organizations who were once part of Epilepsy Foundation of America. We take pride in providing in-person programs and services such as counseling, support groups, education in schools with different curriculums for different audiences (school nurse, teachers, elementary, middle school students, first responders etc.) as well as advocacy services, spring/summer/fall camp for children and teens, and residential facilities for adults with a diagnosis of developmental disabilities and epilepsy.
HSO: What is the most often reoccurring question asked about epilepsy?
KS: First time callers to the office often are not sure exactly what to ask about epilepsy. They may be looking for statistics on their type of seizures. They may ask about which neurologist they should consider, have questions about medication side effects or often ask about service dogs. But most of the time we get the sense that people just want to know they are not alone. They want to know that even though they may not see it, that there are other people out there living with epilepsy, just like them.
HSO: What is an aura and why is it significant?
KS: Some people living with epilepsy may experience an aura prior to having a seizure. An aura is a feeling or sensation such as a certain smell, seeing flashing lights, feeling a déjà vu, or a sudden intense feeling of happiness or sadness. An aura is significant because it can alert the that a seizure is coming and they can prepare themselves by making sure they are in a safe position and communicate that they may experience a seizure.
HSO: In what ways has brain surgery become a second option to medication since the time when it was considered a “last resort”?
KS: While I would defer this question to an epileptologist, my opinion would be, with the advances in technology, there are certain tests or scans that may be able to pinpoint exactly what part of the brain triggers the seizure. There are other options that are also available and it is important to note that not everyone living with epilepsy is a surgery candidate. Since epilepsy is different for each person, the individual’s neurologist will discuss all options available with their patient.
From our experiences with people calling our office, people do seem to be much more open to alternative approaches to therapies than ever before. We believe some of this is because the successes reported by peers via social media, support groups and online community forums. Hearing what others have tried provides incentive for people to then consider for themselves. Medications will always be the first line of defense but alternative methods and even unconventional treatments are now more than ever being considered by people living with epilepsy.
HSO: When did the ketogenic diet become part of the treatment regimen for individuals with epilepsy?
KS: The ketogenic diet was actually introduced back in the 1920s and was used for 20-30 years before more anticonvulsant medications were approved and used. The ketogenic diet really resurfaced in the 1990s and has been used specifically among children living with epilepsy.
HSO: What are the risks for pregnant women who have epilepsy?
KS: Risks for pregnant women who have epilepsy mainly come from some of the anticonvulsants they may be taking for their seizure control. These medications tend to work differently during pregnancy, so it is very important to work with their neurologist to determine if there should be a change in medication. Under no circumstance should a person stop taking their medication without discussing it with their neurologist. Since there are so many different types of seizures that affect everyone differently, it is important for a woman to work with a professional as soon as she learns she is pregnant.
HSO: What are the major risks of untreated epilepsy?
KS: The major risks for untreated epilepsy take the form of uncontrolled seizures. Increased seizure activity can result in not only the physical harm incurred directly from the seizure (i.e. falls, injury, status epilepticus) but also from the lasting effects and lack of independence included with having an uncontrolled chronic medical condition. Some of the ongoing difficulties one may face include: inability to live alone, inability to drive, inability to hold down a job, memory issues, relationship issues, anxiety and depression.
HSO: What is the process for an individual who wants to volunteer? In what types of activities can a volunteer expect to be engaged?
KS: If someone would like to volunteer in central Ohio, they can call us at 614-725-1031. If they are from the Greater Cincinnati, Greater Dayton or Northern Kentucky, please call us at 513-721-2905. Additionally, you can email us at eao@epilepsy-ohio.org. Please feel free to also visit our website a www.epilepsy-ohio.org
We have many different types of volunteer opportunities. We host several different fundraising events that require many volunteers. Additionally, we would love volunteers to help with our weekend and week-long camps for children and teens living with epilepsy. We would love to have volunteers become part of our different fundraising committees. We could also use volunteers to help us assemble our Annual Appeal in November of each year. Please feel free to reach out to us at any time.
HSO: Out of all epilepsy myths, which myth is most prevalent in your opinion and why?
KS: There are several myths that are most prevalent:
Myth: During a seizure, you must put something in a person’s mouth so they do not swallow their tongue.
Fact: A person cannot swallow their tongue. Putting something in someone’s mouth can actually cause more harm to the person and to yourself.
Myth: You should restrain or hold a person down while they are having a seizure.
Fact: Try to turn the person on their side to keep their airway clear. Protect the person from furniture and sharp objects.
Myth: People with epilepsy have a learning disability or have a developmental disability.
Fact: While some people with epilepsy may have a learning disability, the majority of people living with epilepsy do not.
HSO: What does the future look like for epilepsy?
KS: One in 26 people will be diagnosed with epilepsy at some point in their lifetime. People may not think they know anyone living with the condition, but chances are, they do. Epilepsy is more prevalent than Multiple Sclerosis, Parkinson’s Disease, Muscular Dystrophy and Cerebral Palsy combined.
With advances in technology, medications to treat different types of seizures, medical devices and research, our hope is that a cure is on the horizon. Until that time, we will work hard to minimize the spectrum of challenges created by seizures by supporting those living in our community with epilepsy.
Photo courtesy of Kathy Schrag
About Kathy Schrag
Kathy Schrag is responsible for the daily operations of Epilepsy Alliance Ohio. She is responsible for establishing a forward-thinking strategy that evaluates the current strengths and services of the Epilepsy Alliance with the ever-changing needs of the clients and communities the EAO serves. Kathy is responsible for all 61 EAO employees with eleven employees directly reporting. She oversees the EAO annual operating budget, monthly monitoring and makes changes as needed. Kathy provides oversight on all programs and services offered by EAO.
Nathan Collins is a managing editor. Feedback welcome at ncollins@cityscenemediagroup.com.
