Tag: Epilepsy

Having experienced seizures for the past 15 years, Ariana Green feels she can give support and encouragement to others by sharing her story. In fact, helping others who experience severe epilepsy is what she feels born to do.

“I have learned a great deal about how to cope with my condition and still have a great life full of wonderful experiences and adventures,” said Ariana.

“My story starts before I was born. The doctors detected an arachnoid cyst on my brainstem. It was about the size of a plum,” said the Mission Hills resident. As a result, Ariana began to experience life-threatening seizures that would last about 5-8 minutes long at the age of 3.

“I needed rectal Diazepam for them to stop,” she said. “We had to try something different.”

When Ariana was 5, her care was transferred to the Ronald Reagan UCLA Medical Center, where she met Dr. Jason Lerner, a pediatric neurologist, and Dr. Gary Mathern, a pediatric neurosurgeon. Ariana underwent a 9-hour partial hemispherectomy that removed the temporal, occipital and parietal lobes of her brain.

“The seizures stopped for two years but then came back,” said Ariana.

She continued to have different forms of seizures including partial seizures, focal seizures, and drop attacks over the next decade. At 15, she underwent a second operation, a procedure that took five hours to complete. “I had the RNS NeuroPace implant surgery that zaps the abnormal electrical activity before it spreads to the other side of my brain which stops the seizures. It has reduced my seizures by 75%.”

Staying connected to the epilepsy community in San Diego through The Epilepsy Foundation of San Diego County’s monthly support groups enables Ariana to meet new people who also live with epilepsy, and attending the Foundation’s annual conferences allows Ariana to hear doctors speak about the recent advances in medicine and treatment for those living with refractory epilepsy.

“I also enjoy speaking about my story because my situation is very unique in the fact that I am able to live with only half my brain compared to other people,” she said. “It is not easy for me to learn very complex subjects like math with half of my brain. It is a struggle, especially considering that I am required to take Calculus 1 in my first year of college next year. I am concerned that I won’t have any modifications to the class like I have now. I want to have as much support as possible so I can survive Calculus 1. I can’t wait to start college. I am excited.”

Ariana acknowledges that epilepsy isn’t easy to treat, that living with epilepsy is difficult sometimes, but believes in becoming seizure-free someday. It’s from that belief that Ariana encourages others to remain hopeful.

“Keep going so that you can envision seizure freedom and get where you need to be, which is an independent adult that is not relying on everyone to do things that you should be able to do yourself,” said Ariana. “Envision seizure freedom in your dreams at night. Do the hard work and you can get there.”

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We appreciate Ariana for sharing her epilepsy journey!

What have you learned from your epilepsy journey so far? Let us know by adding your experience to #MyEpilepsySDStory today!

Over the years, Lisa has seen many people be a part of the caring and supportive community nurtured by the Epilepsy Foundation of San Diego County through their participation in the Foundation’s events and Epilepsy Support Groups.

“We all have different experiences, but at the same time can connect with others who know what it’s like to have seizures, and the weight we all carry on a daily basis,” said Lisa.

For Lisa, the monthly support group meetings help cultivate community by providing space for people with epilepsy, as well as those who have loved ones living with epilepsy, to feel seen and heard which is especially important when epilepsy is still so misunderstood. Lisa appreciates how the meetings also provide opportunities to learn more about epilepsy from professionals and those with lived experience, such as ways to cope and to ask for help.

“It’s so important and special for me to have a community where I feel understood, and at the same time, feel I can help and support others,” said Lisa. “Meeting friends and other people with epilepsy has made me feel less alone.”

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Let us know what it’s been like for you to connect with San Diego’s epilepsy community. Add your experience to #MyEpilepsySDStory today!

Relocating to a city can leave anyone feeling vulnerable, especially when someone lives with epilepsy. So, it can be a huge uplift to connect with others with similar lived experiences before establishing new roots.

“I was able to gain a feeling of community before I moved to the area,” said Len. For Len, being able to attend our series of Epilepsy Support Groups online and in real time has made an impact because they were able to reach many people ahead of moving to San Diego.

“It was great to feel that local connection, and see and hear stories about how I’m not alone in my disability from the moment I relocated to the area,” said Len.

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Are you someone who is impacted by epilepsy and new to San Diego? Let us know what it’s been like for you to connect with San Diego’s epilepsy community. Add your experience to #MyEpilepsySDStory today!

For one anonymous community member, the benefit gained from the community built at the Epilepsy Foundation of San Diego County centers on being able to reach the organization’s team. 

“I find the facility and all the staff to be very professional and interested in helping those with epilepsy,” they said, observing that EFSDC has cultivated a sense of community in San Diego County because the team makes themselves available.

“The foundation is always open and we have weekly meetings,” they said. “Good stuff!”

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Are you impacted by epilepsy and live in San Diego? Please consider adding your experience to #MyEpilepsySDStory today!