The Epilepsy Foundation of Arizona Demystifying a Common Condition
By Paige Perry
In a day and age when people openly discuss their own fights with cancer, relatives’ battles with Alzheimer’s disease, or their children’s struggles with a learning disability, it is a surprise that a disease that afflicts one percent of the population—at least 3 million people—remains in the shadows. Epilepsy is the most common neurological condition in children and the third-most common in adults. At least 200,000 new cases are diagnosed each year, but many cases go undetected or untreated. Epilepsy is an initially frightening disease, and individuals afflicted with it often feel embarrassed to admit it.
According to the Epilepsy Foundation’s official Web site, epilepsy is a medical condition that produces seizures that affect a variety of mental and physical functions. It is also known as seizure disorder. Epileptic seizures differ from person to person. Some experience convulsions and loss of consciousness, while others stare blankly into space, smack their lips, or experience jerking movements. The inconsistent and varying signs are one reason why so many cases go untreated and undetected.
Luckily, the Epilepsy Foundation of Arizona is becoming more and more visible in the state, encouraging those with epilepsy to get the treatment they need and to share their stories with others.
“I grew up with epilepsy as a teenager,” says Cave Creek resident Michelle Lane. “It wasn’t something you talked about to anyone other than your immediate family or physician. In college, I was out on my own, and I quickly learned that it was advantageous to share my experiences with my new friends. They wanted more and more information, and it helped me to understand my condition in a new way.”
One way in which the Epilepsy Foundation of Arizona encourages people with histories like Michelle’s is inviting them to attend Camp Candlelight. Camp Candlelight is a summer camp for children and teens (ages 8–15) who suffer from epilepsy. The condition is most prevalent in children, and many dread, as Michelle did, that they will be judged by their disease. This camp gives them the chance to participate in outdoor activities with their peers. Camp Candlelight also acts as an educational experience by incorporating discussions on seizures, different medications, and socialization. Campers can express their concerns and feelings to well-trained camp counselors, and an onsite neurologist and nursing staff are readily available for the children’s physical well-being.
The Epilepsy Foundation of Arizona is also educating the community by hosting an “Ask the Expert” series, which are informal question-and-answer sessions with Arizona neurologists from Mayo Clinic, Barrow’s Neurological Institute, and Phoenix Children’s Hospital. These are all open to the public.
Thanks to the foundation, the condition of epilepsy is given proper focus to increase awareness and reduce embarrassment. Once properly treated, individuals with epilepsy go on to lead productive lives, without fearing seizures. Truman Capote, Margaux Hemingway, Agatha Christie, and Danny Glover are just a few of the examples of high-profile people who did not or do not allow epilepsy to control their lives. Michelle Lane, who owns a home, gift, and accessories store, will not let the disease consume her life either. And with the help and support of groups like the Epilepsy Foundation of Arizona, no one else need allow epilepsy to take over theirs.
The Second Annual Mardi Gras Gala benefiting the Epilepsy Foundation of Arizona will be held Tuesday, February 5 at The Venue of Scottsdale. More information on the foundation can be found at epilepsyfoundation.org/arizona.