Epilepsy Blog Relay: How the First Lady can influence disease stigma

I recently started watching “The First Lady” featuring Viola Davis as Michelle Obama, and Michelle Pfeiffer, who takes on the role of Betty Ford, and Gillian Anderson, who plays Eleanor Roosevelt. At the same time I began digging deeper into the history of disease stigma. I learned more about how the first lady has impacted stigma in a variety of disease states.

This story is part of the Epilepsy Blog Relay™.

Researching disease stigma

As I fell deeper and deeper down this internet rabbit hole, I discovered that Betty Ford was influential in moving Breast Cancer Awareness forward as she shared her personal experience. Michelle Obama spoke out on behalf of veterans struggling with mental illness. And Barbara Bush was a champion for AIDS Awareness and gay rights during the height of the crisis.

A First Lady with epilepsy

What I didn’t realize in my decades of epilepsy advocacy was that Ida McKinley lived with epilepsy for 25 years before she became First Lady to President McKinley (1897-1901). According to a book on Eleanor Roosevelt by Blanche Wiesen Cook, “President McKinley took great care to accommodate her condition. In a break with tradition, he insisted that his wife be seated next to him at state dinners rather than at the other end of the table. Guests noted that whenever Mrs. McKinley was about to undergo a seizure, the President would gently place a napkin or handkerchief over her face to conceal her contorted features. When it passed, he would remove it and resume whatever he was doing as if nothing had happened.”

Epilepsy is everywhere

Though Ida McKinley did not have the opportunity to become a champion for epilepsy. By her mere presence in the White House she shows us that epilepsy should never be the reason to limit our dreams and opportunities.

Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.

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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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