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IOM: Epilepsy across the spectrum

If you’ve read Epilepsy by the Numbers, you know that epilepsy is our nation’s most common neurological disorders, yet the public’s understanding of the disorder is limited. In many cases (70%) there is no known cause for a patient’s epilepsy. Many people aren’t even sure what they should do if they see someone having a seizure.

A good hard look
The IOM was asked to examine the public health dimensions of what they refer to as “the epilepsies.” Their examination was to focus on public health surveillance and data collection; population and public health research; health policy, health care, and human services; and education for people with the disorder and their families, health care providers, and the public.

Test your knowledge 
 
 

A complex spectrum
According to the IOM: “Epilepsy is a complex spectrum of disorders that affects an estimated 2.2 million Americans in a variety of ways, and is characterized by unpredictable seizures that differ in type, cause, and severity.”

But as we all know, living with epilepsy is about more than just seizures. There are challenges in school; uncertainties about dating and friendships; and even more insecurities when it comes to employment; limitations on driving; and questions about independent living.

The results
As a result the IOM makes recommendations ranging from the expansion of collaborative epilepsy surveillance efforts, to the coordination of public awareness efforts, to the engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved care and services.

Next steps
The group recommends taking action across multiple dimensions. This approach will improve the lives of people with epilepsy and their families. The realistic, feasible, and action-oriented recommendations in this report can help enable short- and long-term improvements for people with epilepsy.

Read the report

Let us know your thoughts.

author avatar
Jessica K. Smith Founder and CEO; Executive Director
Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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