102: Angels of Epilepsy Founder Natalie Y. Beavers

Uninvisible Pod with Lauren Freedman

Natalie Y. Beavers is an award-winning epilepsy survivor, advocate, and founder of the Angels Of Epilepsy Foundation, a non-profit organization that brings awareness, education, and community to epilepsy survivors and their families nationwide. Diagnosed with epilepsy at the age of 5, a seizure while she was driving in 2006 caused a life-changing and tragic car accident. Subsequently, doctors informed her that there was damaged tissue on her left temporal lobe and a cyst on her brain. While two craniotomies have decreased her seizure activity, the cyst remains — so she still experiences seizures from time to time. Her many hospitalizations introduced Natalie to fellow epilepsy survivors and their families, and in 2008 she launched Angels of Epilepsy as a response to the community — to provide deeper support networks and fulfill needs from transportation to medical IDs, among others. Because of her disorder, Natalie continues to experience short-term memory loss — a common side-effect of epilepsy. In a doctor’s appointment in 2013, she couldn’t recall details of recent seizures…so she decided to create and publish The Seizure Diary, which aids those experiencing seizures in tracking their episodes and being able to report back to medical professionals with greater detail and accuracy. Most recently, she has also co-authored Hacking Healthcare with Lauren. What started as a guide to the US healthcare system for the Black community has now become a project with much wider range and significance; an ever-evolving document to provide support and resources to anyone relying on healthcare and finding themselves all at sea.

Tune in as Natalie shares:

• how she was first diagnosed with epilepsy
• that she’s had periods of seizure inactivity that have enabled her to go off medication
• that by the age of 28, damaged tissue on her left temporal lobe had expanded — and a surgical implant was suggested in order to remove the tissue safely
• that the cyst on her brain has never been removed, because its removal could paralyze her
• that surgery really helped control her seizures, and reduced their severity and occurrence by about 80%
• how her family has provided her with emotional and practical support
• why she is a cannabis advocate
• that meditation has been an effective coping mechanism to control seizure activity
• when and how she reveals her condition to dates, employers, and the like
• why she founded Angels of Epilepsy

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