JACKSONVILLE, Fla. - This National Epilepsy Awareness Month, local people battling the condition are sharing their stories.
Epilepsy affects one in 26 people, several of whom live in the Northeast Florida area.
On the first day of Epilepsy Awareness Month, Mayo Clinic Jacksonville hosted an awareness social. Doctors shared the latest techniques, research and findings.
Several patients discussed the treatments they've received with News4Jax.
Peggy Cardona's story
Peggy Cardona, who lives in Ormond Beach, suffered from epilepsy, but found her cure at Mayo Clinic in Jacksonville.
"About 26 years ago, I was pregnant with my daughter. And I had a grand mal seizure while I was asleep," Cardona said. "That's when everything started.”
Cardona’s new adventure into motherhood ran parallel to her journey into epilepsy.
Doctors helped her manage the condition for years. But it got worse, and about six years ago, she had to give up a great job.
At a recent event at Mayo Clinic, she told News4Jax about her despair.
"It was pretty lonely. You try to find different things to do to keep yourself busy," she said. "But during that time, I also developed vertigo, along with the seizures, so it made my problem a little bit more bad."
Cardona lost faith in medicine, but finally sought care from Dr. William Tatum at Mayo Clinic Jacksonville.
"I didn't really trust doctors at that time," Cardona said. "He grew my trust back."
That trust was built on a diagnosis and treatment plan she had not anticipated.
"Peggy is a remarkable story because she had been battling these seizures for quite some time," said Dr. Alfredo Quinones-Hinojosa, neurosurgery chair at Mayo Clinic Jacksonville.
While operating on Cardona, Quinones-Hinojosa discovered a brain tumor was the source of the seizures. Cardona was awake during the procedure.
"A form of tumor that sometimes can affect patients and, if we can take them out, not only can we cure the patient from this kind of tumor, but we can also, potentially, you get rid of their epilepsy and that's exactly why her case is so remarkable," Quinones-Hinojosa said.
Cardona said having the tumor removed changed her entire outcome.
"It changed my whole world. I grew a lot of trust," she said. "Dr. Q and his team that did the surgery were absolutely amazing."
Quinones-Hinojosa and Tatum have worked together in using novel technology, which they hope will solve problems on a global scale.
Cardona said she has done some speech therapy and other rehabilitation since the surgery, and she hopes to be able to drive again very soon.
One of her big joys recently was when she went on a bicycle ride with her grandson.
She told News4Jax that she felt like a little child again.
Matt Derechin's story
Matt Derechin was first diagnosed with epilepsy when he was 19, but was living life and making it work through medication.
Then, in 2008, when Derechin was running in the first 26.2 with DONNA marathon, he didn't make it to the finish line for the half-marathon.
"I made it to about mile six and I just had a grand mal seizure. I remember, sort of, being in the race, running and then, kind of, this wave, this aura started coming up behind me," he said. "The next thing I knew, I was in the emergency room at the hospital and my wife was there with my kids. They told me that I had had a seizure."
Derechin was surrounded by his family when News4Jax met him at the Mayo Clinic event. He is a patient at Mayo Clinic, and an employee, so no urging was necessary for him to sing the praises of the medical staff that helped him find relief.
Derechin said new medication and persistence created success.
He has gone from suffering at least one seizure every year, to this:
"I haven't had a seizure in five years. I haven't had one seizure in five years," Derechin said.
Tatum is the neurologist who specializes in epilepsy at Mayo Clinic.
"We have new treatments, new mechanisms, new therapies that translate to good outcomes for patients," he said.
Tatum said there are more than 30 medications for epilepsy available worldwide.
"Often times, it's matching medication to the patient to get the perfect coverage and control the seizures. But we have new techniques. We have new types of therapies, including steroid therapies that modulate the immune system. We have newer types of classes of drugs that involve different mechanisms that have never been utilized before."
So now, patients, including Derechin, are off to the races again.
"I've run, I think, three DONNAs in a row without incident. You know, I ride my bike. I go to my beach. So yeah, it's so far, so good," Derechin said, laughing.
Tammey Taylor Osburn's story
Mayo Clinic Jacksonville is earning its reputation of quality care by developing innovative treatments for epilepsy.
Care teams at Mayo Clinic include neurologists, neurosurgeons, radiologists, mental health specialists and researchers who bring the latest technology to the patient.
One of those patients is a Georgia woman who was transformed after living in fear and shame.
"I have epilepsy, and I have what is called intractable epilepsy, which means it's medication-resistant," Tammey Taylor Osburn said.
Osburn has family in Baker County, but she travels all the way from Atlanta to see doctors in Jacksonville.
Her epilepsy caused seizures that were life-threatening. She discovered that when her husband found her in the middle of the night.
"By the time EMS got there, they ended up working on me for 45 minutes before they were even able to transport me," Osburn said. "They said I almost died that night."
Surgery wasn't an option for Osburn, but Tatum and Dr. Bob Wharen had something creative to consider.
Osburn explained the treatment she has now.
"I have now what is called an RN, a responsive neurostimulator, which is like a pacemaker for the brain, like, you have in your heart, but for the brain," she said.
"We are able to put in a little computer chip that we embed in the skull and then we can place the electrodes in the areas of the brain that are causing the seizures. What that computer chip does is constantly monitor the brain waves. And when the seizures start to build up, it can deliver a stimulus that will abort the seizure from actually occurring," said Wharen, a neurosurgeon at Mayo Clinic Florida and one of the founding doctors at Mayo Clinic Jacksonville.
Osburn said the device has saved her life.
"I hope that there are other people out there that can get their lives back the same way I did mine," she said.
The computer chip that Wharen described monitors the brain activity constantly, and that information can be downloaded for doctors to see.
In addition to Mayo Clinic Jacksonville, local professionals at UF Health and Wolfson Children’s Hospital are also focusing on stopping seizures and finding a cure.
Copyright 2017 by WJXT News4Jax - All rights reserved.