From Pinktober to Purple in November for Epilepsy Awareness Month

Pinktober Frustrations

As an epilepsy advocate and a cancer survivor, Fall brings on simultaneous feelings of gratitude and frustration. Throughout Pinktober, I find myself a bit frustrated with the onslaught of info on breast cancer, knowing that epilepsy has very similar prevalence and and significantly worse mortality statistics.

Yet, I know that Breast Cancer awareness, and the advances in treatments and standards of care that I have directly benefited from, did not come without a fight. Were it not for Mary Lasker’s outrage and action, these changes may never have come to pass. If Mary Lasker is not a name you are familiar with, she turned the American Cancer Society from an organization with 1,000 members and a budget of $102,000 and developed it into one with $110 Million by 1961. She also lobbied congress to establish the National Cancer Institute and was responsible for running the first radio campaign at a time when no one would speak the word cancer.

I know that many who are living with an epilepsy diagnosis, as well as many other neurological diagnosis, still feel they need to hide it as people did of their cancer diagnosis in decades gone by. I know there is a lack of urgency to diagnose, treat and manage symptoms both on the part of patients and by many in the health industry, yet the mortality in epilepsy and other neurological conditions is extremely high.

By the Numbers

So lets take a look at the numbers.

Cancer kills

Okay but cancer kills so it’s way more urgent right? But wait a minute let’s take a look at the mortality statistics.

Maybe it’s time we start talking about epilepsy with the same urgency we talk about cancer.

References:

https://seer.cancer.gov/statfacts/html/breast.html

https://www.cdc.gov/epilepsy/data/index.html

https://www.frontiersin.org/articles/10.3389/fepid.2023.1081757/full#B131

https://www.epilepsy.com/complications-risks/early-death-sudep

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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Epilepsy