The epilepsy community is full of fearless warriors living life to the fullest, despite having epilepsy, and inspiring others to do the same. Fortunately, Instagram gives people living with epilepsy a chance to feature their advocacy efforts center stage.
After scouring Instagram, We’ve put together a list of twenty Instagram accounts to follow now. Check out the inspirational epilepsy warriors below, and share your favorite account with us on Instagram!
Seyi Aragbada is a digital content strategist working to spread the word about epilepsy in Nigeria. Founder of @epilepsynigeria, follow her for topics such as epilepsy, marketing, and content creation.
Check Out: Seyi shares her insights about living with epilepsy and relationships.
Francesca Turauskis is an advocate for adventure and epilepsy awareness and the founder of @syadventurers. Her account focuses on outdoor adventuring, hiking, and ending the stigma surrounding epilepsy.
Check Out: Fran shares a micro blog about running an ultra marathon for Young Epilepsy.
Jamie Wissinger, epilepsy advocate and @1in26podcast host, shares easy to read educational content about disability awareness and epilepsy, family, and how loved ones can assist people with epilepsy to inspire her community to not let their disabilities define them.
Check Out: Jamie’s BFF Guide to epilepsy - a downloadable guide discussing how to help when your friend or loved one has a seizure.
- 4. @be.brave.brains
Sharon has created an epilepsy advocacy page that inspires individuals struggling to deal with their feelings surrounding epilepsy. She shares personal stories and posts about epilepsy awareness, upcoming events, and literary quotes about illness and disability.
Check Out: Sharon focuses on engaging the epilepsy community through positive quotes and conversations.
Torie Robinson is a public speaker, consultant, and the founder of @epilepsysparks. She is working to normalize the experience of individuals diagnosed with the disease. Her detailed information and knowledgeable tone make her an excellent source of facts about epilepsy.
Check Out: Torie shares her experience after visiting the PAL Epilepsy Lab at Kings College London Hospital.
A lifestyle blog maintained by epilepsy advocate and teacher, Jewel. Founder of @wellfitmama, follow her for useful information about epilepsy and motherhood, combined with a healthy dash of fitness, style, and giveaways.
Check Out: Jewel shares insight into motherhood and maintaining independence.
- 7. @changingfocus18
Whitney Petit is a blogger and educator working to spread epilepsy awareness, with a focus on the African American community. Her account focuses on epilepsy advocacy, as well as the importance of self-care and learning to identify seizure triggers.
Check Out: Whitney inspires others with a motivational quote and words of wisdom.
Christalle Bodiford is an adventurous and creative epilepsy advocate focusing on epilepsy education, personal insights, artwork, and travel musings. Her positive mindset sets the tone of her content, inspiring others to live with intention and be their own advocate through sharing her personal journey.
Check Out: During her @Diversability takeover, Christalle shares what it was like having her first documented seizure at age thirteen.
Jared Muscat focuses on day-to-day lifestyle content, fatherhood, as well as epilepsy awareness information. Sharing his brain surgery process, Jared inspires individuals who want to learn more about epilepsy and its various treatments, as well as how one can recover and lead a full life.
Check Out: Jared shares his gratitude and recent experience of working with the Epilepsy Foundation Los Angeles.
This creative blog is run by an epilepsy advocate named Stephanie, aka Alyrical, who enjoys numerous artistic pursuits and shares snippets about her daily life, motherhood, and living with epilepsy.
Check Out: Stephanie shares her perspective on being 1 in 65 million people worldwide living with epilepsy.
Leah’s account focuses on her advocacy efforts for pyridoxine-dependent epilepsy (PDE) as well as rare disease education and awareness. She shares her journey of motherhood, while painting a picture of what it’s like to be a mother to a child with special needs.
Check Out: Read Leah’s insights on the lack of changing stations for children with disabilities.
Austin focuses on his culinary career and history with epilepsy, combining the two effortlessly. His account is a good lifestyle page to see how one can lead a happy, full life after epilepsy diagnosis.
Check Out: Austin celebrates being three years seizure-free with artwork.
Meghan focuses on living a healthy, active lifestyle with epilepsy, and shares fitness routines. Her account is a good resource for those who need health and fitness advice with a nod to keeping epilepsy symptoms in mind.
Check Out: Read this inspiring motivational post from Meghan about owning your truth.
Natalie is an advocate, speaker and founder of @angels_of_epilepsy. Her Instagram account focuses educational information about epilepsy, business, and current events, focusing on the African American community.
Check Out: Natalie sheds light on the mental health crisis in the United States.
Martin Hossell’s account demonstrates that an epilepsy diagnosis doesn’t have to hold one back from traveling. He shares photos from his world travels as well as photos from his medical appointments and personal stories of challenges faced when living with epilepsy.
Check Out: Martin discusses a lesson he’s learned from having epilepsy.
Rafaela Estrougo’s account showcases her daily life, ranging from outdoor adventures to MRI testing. It’s a great example of normalizing life with epilepsy. Readers may see themselves in the images on this page or learn new facts about living with epilepsy. A Brazil native, Rafaela features English and Portuguese captions.
Check Out: Rafaela shares the importance of a positive mindset.
Derrick Kay is a UK-based Instagram and YouTube personality focusing on epilepsy awareness. Follow him for lifestyle photos and interesting educational information about living with epilepsy.
Check Out: Derrick was featured in BBC Three’s video “Things Not to Say to a Person with Epilepsy.”
Kyle Parker provides first hand information about living with severe seizures and shows readers his outdoor adventures - providing them with a glimpse into his medical appointments. Individuals who want a realistic view of managing epilepsy while leading an active life will enjoy this content.
Check Out: Kyle shares a perspective of gratitude as he reflects on his accomplishments.
Nicole Kleppe runs a lifestyle page focusing on her family and their day-to-day life, while highlighting their experience with Dravet Syndrome, a severe form of epilepsy. The page shows the life of a family with chronic illness, mingling travel photos with hospital photos and giving visitors a clear picture of the toll epilepsy can take on a family.
Check Out: Nicole shares how her daughter, Blythe, shows resilience in the face of dravet syndrome.
Artez Thompson is a chef, humanitarian, and epilepsy advocate that features educational information about epilepsy, culinary dishes, and advocacy efforts.
Check Out: Artez shows off his baking skills to raise epilepsy awareness.
With so many great Instagram accounts, we’ve barely scratched the surface! Do you have an Instagram account you think we should add to our list? Share it with us at SLMarketing@brainsentinel.com and we’ll be sure to check it out.
Want more information on what’s it’s like to live confidently with SeizureLink? Visit our website to learn more about the SeizureLink System and how it can help you live a more independent lifestyle.