Breaking the Stigma: Epilepsy Unraveled
by Catherine Wysoczanski
Imagine living each day with a vicious stalker following your every move and never knowing when they will strike. You never know if they will attack while you are sleeping, in school, at work or when simply walking down the street. No matter where you go you are being followed. This stalker, which follows more than 65 million people, is known as epilepsy. While at times it may seem like life can be overtaken by this stalker, it is possible to understand epilepsy and advocate awareness throughout the community.
Epilepsy is a neurological condition of the brain that can affect anyone at any time. It is characterized by recurring seizures, which are physical reactions to sudden, brief disturbances in the electrical activity in the brain. “When our daughter, Alexa, was 3 years old she started having seizures,” says First Coast parent, Shauna Anderson. “After I saw the first couple I was trying to figure out what was happening. We found out that she has partial complex seizures,” she says. Shauna and her husband Jonathan learned that a partial complex seizure usually starts in the small area of the temporal or frontal lobe of the brain. The Epilepsy Foundation states that this type of seizure quickly involves other areas of the brain that affect alertness and awareness. Even if the person’s eyes are open and they make movements that seem to have a purpose, in reality “nobody’s home.” If the symptoms are subtle, other people may think the person is just daydreaming. “Alexa was having seizures on the hour every hour. Now she is doing a lot better and only has seizures two to three times a week. She is in third grade and we are blessed that she is so strong,” says Shauna. In the beginning Shauna and Jonathan were unsure of where to turn to get support. “There were so many things we could have done. We probably would have felt more educated with resources and support,” says Jonathan. “About a year after Alexa was diagnosed we found out about the Epilepsy Foundation of Florida. They have resources to help parents and people learn about epilepsy. We’ve gotten very involved and I joined the board [of directors] three or four years ago,” he says. “From a father’s standpoint I would try and connect with somebody to get more understanding of what is happening. It could be a lifetime of trying to figure this out. You have to be patient, and love and support your child. You will figure it out together.”
“Currently more than 375,000 Floridians are living with epilepsy,” says Viktor El-Saieh, executive director of the Northeast Branch of the Florida Epilepsy Foundation. “The Epilepsy Foundation of Florida’s goal is to educate people about what epilepsy is.
We provide valuable services to both families and individuals that have been affected by epilepsy. It doesn’t matter what their financial circumstances are, we provide medical services, case management, counseling, support groups, education and much more,” he says. One of the biggest challenges the Epilepsy Foundation of Florida (EFOF) encounters is educating people about epilepsy. “It’s a difficult conversation to have because it’s extremely broad,” says Viktor. “Epilepsy affects everyone who has it in entirely different ways. Some people can be severely affected and others can lead a productive life.” The EFOF is one of the best resources to turn to when facing this diagnosis. There are two support groups that meet each month in Duval and Clay counties. This year, a new art therapy program launched in Gainesville with plans to move it to Jacksonville at some point in the future. The program, called Studio E, brings people who have epilepsy together for an eight-week art program. “The EFOF has brought in an art therapist for this program. The point is for people with epilepsy to be together in a group setting and let their creative sides flow. They get to do all different kinds of artwork with different mediums like painting and pottery,” says Viktor.
One of the biggest steps for those with epilepsy is spreading awareness. First Coast mom Debbie Whittle has been involved with EFOF since her daughter was diagnosed with epilepsy more than eight years ago. “One of the biggest ways that people can spread awareness is to get out there and talk about it. A lot of people are afraid of epilepsy and don’t want others to know they have it because of the stigma attached to it,” says Debbie. People often misunderstand epilepsy and others may hesitate to get help because of the stigma and stereotypes attached to epilepsy. A person may think they are experiencing an episode that they can simply shake off, while others do not seek treatment because they are concerned that
this stigma could affect their relationships with friends, coworkers and even potential employers. “My daughter’s friends were very supportive of her. The diagnosis was very difficult because she lost some of her freedom like being able to drive. She had already driven and knew what it was like, so to have it taken away was very hard,” says Debbie. “At that age you don’t want to be driven around by your mom. Right now she is doing fantastic and is seizure free,” she says. “It was such a learning experience for me, and I decided to get on board with the Epilepsy Foundation and try and educate people about epilepsy because there are so many different types of seizures. People just think of a grand mal seizure where someone is convulsing on the ground, but there are so many more types of seizures.” It is never easy for anyone to be diagnosed with epilepsy, but as long as they take the time to do research they can find a way to live a productive life and break that stigma.
“A lot is understanding what epilepsy is and what it is not,” says Dr. Harry Abram, pediatric neurologist at Nemours Children’s Clinic. “When we meet a patient for the first time, we spend an hour simply discussing it.
There is a lot of literature available to help learn about epilepsy, but it’s important to find out as much as you can and be able to have all of your questions answered. It doesn’t mean that you aren’t going to college and it doesn’t mean that you can’t have a family. Even if someone has epilepsy, it is possible to lead a normal life,” he says. “Some children do outgrow their epilepsy and it’s important to be optimistic that these kids will be okay and their seizures can be controlled with medicines. On the other spectrum, it’s important that parents have their own outlet, so joining a support group is a good idea.” Local mom and neurologist, Dr. Georgia Gianakakos has seen both sides of the spectrum as a parent and neurologist. “My husband is also a doctor, and even as health care professionals we were blindsided and bewildered by our son’s diagnosis,” says Georgia. “One of our twin boys has primary generalized epilepsy. His seizures started at age 3 and he is now almost 6. We are thankful that his epilepsy is well controlled and he is otherwise healthy. We pray that he will outgrow the seizures. One of the best ways we’ve coped, and that others can cope, is to have a strong social
support system and education. These are imperative for family and patient health,” she says.
There are now many support groups through different social media handles like Facebook (EpilepsyFLA) and Twitter (@EFOF). Another way parents can get involved with advocacy is by having their child participate in Camp Boggy Creek. “Camp Boggy Creek was founded by Paul Newman for children with serious illnesses to get to go to camp and be a normal kid,” says Dr. Abram. The promise of the camp is that “every child, no matter what their illness is, can experience the transformational spirit and friendships that go hand in hand with camp.” The camp has specific weeks for certain illnesses. “It’s for all types of children. They have a week for children with cancer…a week for liver disease…a week for epilepsy and so on. It’s a chance for kids to spend time with other kids that are experiencing the same thing,” says Dr. Abram. One issue surrounding epilepsy is how frightening it can be since many people don’t fully understand it. “It’s not like having cancer or leukemia. You don’t have physical signs like losing your hair. You look just like any other normal person, which makes it even more difficult,” he says.
You can advocate for those living with epilepsy during Epilepsy Awareness month in November and by participating in the “Walk the Talk” event in April 2015. Together it is possible to reduce the misunderstanding, fear, discrimination and isolation that coincide with the stigma by educating others and increasing awareness through schools, education and even social media. As the EFOF says, “We can reduce the fear and misunderstanding, so the lives of millions of people around the world, people living with the condition and their loved ones, will be forever changed for the better.” Visit efof.org or epilepsy.com to learn more about how you can help end this stigma and work towards a cure.
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