Dr. Nikesh Ardeshna writes about the many paths his journey advocating for people living with epilepsy has taken.
Epilepsy and Advocacy: A Natural Connection
I entered the world of epilepsy advocacy and government relations about 10 years ago when I was a neurology resident. My primary interest was treating epilepsy patients; however, my other interest was policy. Combining these interests, the natural home was treating epilepsy patients and helping assist in the formation of health care policy.
Epilepsy was a prime area for this skill set because approximately 40% of individuals with epilepsy or seizures have never seen a neurologist or epileptologist (neurologist who specializes in seizures). Secondly, there is a significant difference in how epilepsy is viewed not only in different parts of the world, but also, to a certain extent, within different areas of the U.S. Compared to other nations, there is much less stigma associated with epilepsy in the U.S. Nevertheless, it still does exist.
Hence much of my work has been increasing awareness, dispelling misconceptions, and disseminating knowledge about the “current state” of epilepsy. In particular, this includes discussing the different types of seizures, their associated co-morbidities, and various treatment options available.
The areas I focus on include
- seniors and epilepsy,
- understanding trans-cultural perceptions of epilepsy,
- ensuring individuals with epilepsy are not discriminated against,
- increasing awareness of epilepsy, and
- advocating for the needs of epilepsy patients of all ages at the local, state, and national levels.
Advocating with Patients
In fact, as an epileptologist, a significant portion of my office encounters are spent answering questions for patients that they never had a chance to ask and providing information, such as that above, they were never told or were not aware of. Much of this information is not well known in the community.
Advocating with Peers
In the first years of my work, I would meet with state representatives concerning brand and generic anti-epileptic (anti-seizure) drugs. This was followed by lectures to physicians, nurses, schools, and patients. I would review literature, participate in webinars, and post articles on epilepsy.com.
Furthermore, my daily clinical work cannot be done without EEG technicians. For the last seven years, I have given lectures and provided record review sessions at the annual American Society of Electrodiagnostic Technologist (ASET) conference, as well as provided teaching sessions for EEG techs at hospitals.
Due to the support of my mentors (all epileptologists: Drs. B. Smith, G. Barkley, M. Spanaki, and J.Sirven), I have been honored to serve on the Epilepsy Foundation Professional Advisory Board.
Advocating on the Hill
As a yearly physician participant in the Epilepsy Foundation’s Public Policy Institute and “Teens Speak Up!” program (originally Kids Speak Up!), I joined young individuals with epilepsy and their families from across the country on visits to the nation’s capital. Together, we shared personal stories about life with epilepsy during visits with members of Congress.
We convey the legislative priorities of the Epilepsy Foundation to ensure the needs of individuals with epilepsy are met. In some years, those priorities serve to further show the relationship of epilepsy to current issues, such as the epilepsy and traumatic brain injury or caring for veterans through the building of VA Epilepsy Centers of Excellence. One year I had the privilege of participating in a recorded video message with children who live with epilepsy that was sent to House and Senate members. Last year, I spoke about the transition of teens with epilepsy going to college.
Every year that I come to this event I hear a new story that I bring back to my own patients.
[Photo by Jack Hartzman: Dr. Ardeshna speaking at the 2017 Public Policy Institute and Teens Speak Up! event]
Just like each person is unique and different in their own way, epilepsy comes in various types. Each epilepsy story is unique, but …
Epilepsy can be a life time condition. It can affect anyone at any age and their does not need to be a family history. Epilepsy transcends all borders. The journey of advocacy never ends.
Join Me in this Journey
- Join the Speak Up, Speak Out Advocacy Network to let your elected representative know your priorities.
- Start a conversation to help increase understanding and dispel myths about seizures.
- Get involved and support our mission to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
- Share your story by posting in the epilepsy.com forums.