Dr. Julia Valente first learned she had epilepsy at age 19 after her college roommate woke to her having several tonic-clonic seizures. After her initial hospital visit, Julia met with a neurologist back home and learned that her long history of “weird, fuzzy, and out-of-body” experiences were actually seizures. She had experienced hundreds of these seizures since she was 13 years old.
After further testing and multiple MRI’s, doctors confirmed that a brain tumor was the cause of Julia’s seizures. Six months later she underwent brain surgery to remove the tumor, which was ultimately a success. She’s now coming up on her 18-year anniversary of the surgery and lives a seizure-free life with the help of medication.
Julia’s experiences with epilepsy and her delayed diagnosis led her to recognize the lack of public knowledge and information about the disorder.
“Now, looking back, I will say that if there had been more people educated, if I had been more educated, if there was more information out there about what those experiences meant, then I would have undergone surgery seven years earlier and perhaps been able to get off my medications,” Julia said.
Raising awareness of epilepsy has been a focus of Julia’s life since moving to Minnesota two years ago; she is already an EFMN Board member, a Rise Above Seizures Gala Committee member, and Camp Oz volunteer. However, she feels most connected to EFMN’s Seizure Smart Schools program because the reason for her late diagnoses was her own lack of education on the subject, as well as her school’s.
“My journey has brought me to EFMN. Today, I have a voice and an opportunity to educate. And when I feel exposed, I look back to the time a friend reminded me to think about the many people who do not have a platform from which to share their unique story and put their face to this diagnosis,” said Julia.
Julia’s husband Gab Szerda is currently training to compete in the “Tor des Géants” race on September 10th, 2017. The 205-mile non-stop race spans the Alps of Italy and must be completed within 150 hours, but it’s simply the next adventure for Gab, a former Olympic wrestler and “Racing the Planet” participant. All the funds he raises during this race will be donated to EFMN.
“We are thrilled to dedicate Gab’s efforts to EFMN. This race will be the most physically and mentally challenging effort in his life – and as a former Olympic wrestler that is not said lightly. Every step he takes over the 205 miles will be a step dedicated to furthering research, outreach, and resources to those living with epilepsy,” said Julia.