National epilepsy center in Beersheba seeks to change the stigma around epilepsy.
By JUDY SIEGEL-ITZKOVICHElla Maletz311(photo credit: AP)
Alexander the Great, Julius Caesar, Napoleon Bonaparte, Leonardo da Vinci, Charles Dickens, Vincent van Gogh, Thomas Edison and Agatha Christie were known for their talents and accomplishments – not for the fact that they suffered from epilepsy.And people today also prefer that they get credit for their achievements and not for their having this neurological condition which affects one in 100 children and 100 to 150 adults.That is probably the main reason why – out of the 60,000 patients here – only a small fraction are members of EYAL, the Jerusalem-based Israel Epilepsy Association (www.epilepsy.org.il). They don’t want to suffer from the millennia-old stigma attached to its neurological attacks that may be accompanied by frothing at the mouth and used to be regarded as a sign of mental illness or being “bewitched.”Because of this stigma, Soroka University Medical Center opened the Anita Kaufmann Epilepsy Education Center in 2004. Funded with money left by Kaufmann, a US lawyer who developed epilepsy after suffering a severe fall at 14 and died in 2003, the Beersheba center serves the whole country. It was set up by social worker and physiotherapist Galit Greenberg and continues to function with support from Kaufmann’s parents, who live in New Jersey.The goals of the center, which works in cooperation with EYAL, are education through seminars and lectures in schools and workplaces and improvement of public knowledge about epilepsy through various means, including contact with the media. The center can be reached through its Web site at www.clalit.org.il/soroka/epilepsy, its phone line at (08) 624-4481 and e-mail address at epilepsy@clalit.org.il.Four years ago, then-director-general of Soroka (and now outgoing Health Ministry director-general) Dr. Eitan Hai-Am found a donor for an important way to reach children with epilepsy – the publication of a Hebrew-language children’s book called Gveret Epilepsia (Ms. Epilepsy). Written by Shai Dannenberg, colorfully illustrated by Ina Katzav and published by Orion Books, the hard-cover volume simply tells the story of how a boy in first grade named Shai was ostracized by his classmates for having epilepsy.His teacher Ronit, noting his loneliness, tells her entire class the story of a land called Lomargishtov (don’t feel well, in Hebrew), which was inhabited by strange, tiny and transparent creatures, each of them connected to a different conditions, some of them infectious. One always had a runny nose, and another a sore throat. Ms. Stomachache was obviously just as unpopular, just like Ms. Flu. The last three were Ms. Diabetes, Mr. Headache and finally Ms. Epilepsy.Once a year, all residents got together in the decorated streets of Lomargishtov to talk about themselves and answer questions. All but the last were frightening to the children, but when Ms. Epilepsy introduced herself, she did not seem so frightening. Ms. Epilepsy, with whom the other inhabitants were unfamiliar, said that she usually sleeps and causes no trouble. But “sometimes, without intention, I sent to the the brain an electric charge that causes people to act rather strangely.” She described the symptoms, such as staring into space as if they were dreaming or disconnected, or parts of their bodies moving uncontrollably, or sometimes falling on the floor and shaking for a while.“Do you bother them because they are bad children?” the residents ask. “Of course not,” Ms. Epilepsy responded. “The children I live with are wonderful! They like to laugh and make others laugh; they are smart and curious; they like to play and make a fuss with friends and do everything just like all the children.”She noted that the condition she passes on is not infectious and that it is treated with “medications that sometimes anesthetize me so much that sometimes I even forget I exist.” Ms. Epilepsy added that she needed the Lomargishtov residents’ help.
“In one school there is a six-year-old boy with a name that is secret. He’s an excellent pupil and a real friend, but the other children bother him and don’t include him in their parties and games. It’s because he has epilepsy and isn’t exactly the same as the other children.” What can be done? she asked. Her audience agreed that instead of punishing the classmates, they should teach them how to be real friends.Ronit’s class quickly got the message and ended the book with understanding that a child with epilepsy is not someone to fear, avoid or disparage.The Kaufmann center sent 2,400 copies of the book to kindergartens and elementary schools around the country. Of the 60,000 Israelis with epilepsy, about 15,000 of them are children and teenagers. “A school librarian in Metulla thanked me for the book,” recalled Greenberg, “but she confidently declared that there is no one with epilepsy in her town. How did she know?”There are some 50 million people of all ages around the world who have epilepsy – one of the most common serious neurological disorders. In around 70 percent, the seizures are controlled by medications within five years of the first attack. According to the World Health Organization, although epilepsy can be treated cheaply in the Western world, three-quarters of cases, especially in the Third World, are not treated adequately or at all. Without medications, people with epilepsy can suffer psychological distress, physical injuries and social stigma. But fortunately, in Israel, all of the most-necessary medications and other treatments are supplied by the health funds for free or at only nominal cost.Coming from the ancient Greek word for “to seize,” epilepsy comes in more than 40 different forms and can be treated but not yet cured. Some types are due to genes, tumors in the brain or surgery to remove them, while others can be triggered even by reading, hearing music, seeing flashing lights, feeling anxious, getting too little sleep or starting one’s menstrual cycle – or their cause is unknown.Most epilepsy seizures first appear in children and in older people, but they can occur at any age; some occur only during sleep; in one type, the seizures disappear at the beginning of adolescence, while in others, it is a lifetime malady. Severity of the seizures varies from one case to another. A very rare type, whose victims have very short lives, begins soon after birth.Although anti-convulsive medications stabilize the majority of epilepsy patients, a minority have undergone surgery to remove diseased parts of the brain or had stimulators of the vagus nerve in the neck. One company manufactures a computerized electrical device implanted in the chest that delivers electrical stimulation deep into the brain via electrodes in the skull. Some patients are helped by adopting an extreme, high-fat diet.Soroka’s epilepsy education center, the only one of its kind in the country, produces magnets printed in Hebrew and Arabic with advice to passersby on what to do in the event of seeing someone in a seizure.Remain calm. Remove dangerous objects from the epileptic’s surroundings. Despite common belief, do not try to prevent the person from swallowing his own tongue during a seizure. If an object is placed in the mouth, the person will be more likely to bite his own tongue. Lie him on his (or her) side and put something soft under the head. Never put any object between his teeth. Do not restrict his movement. Do not perform artificial respiration. Stay with the person to reassure him until the seizure ends. Call for medical help if the seizure lasts longer than five minutes.After an epileptic seizure, the person may fall into a deep sleep, get a headache or become very tired or confused. He may feel the attack coming and remember it afterward or be unaware he had a fit. Greenberg noted that although epilepsy patients in some US states are allowed to drive after only six months without an attack, here one has to have been seizure free for at least a year.Greenberg, who serves as coordinator of clinical internship in the physiotherapy department of Ben-Gurion University’s Health Sciences Faculty as well as head of the Kaufmann center, notes that while neurologists treat epilepsy patients, there are only about 20 or 25 epilepsy experts who spend all their time on the disease. It is not a preferred field, she said, “because there is no private practice in the specialty, and some of the patients and families are very difficult to deal with. But more specialists are needed.”“One really needs epileptologists who go to every conference and read every article in the field,” the physiotherapist/social worker added. “Our center is really needed, because many people are ashamed to talk about it or ask questions. Some even refuse to get treatment. And often, doctors who treat patients are so busy that they don’t have time to answer all the families’ questions.”Greenberg and an assistant who is on National Service regularly travel around the country to meet with families and give them counselling. “Many people don’t even know what to ask.” She recalled being phoned by a rabbi/teacher in Ashdod. “A boy in the school had his first seizure in class, and the school wanted to throw him out. Every time he had an attack, he yelled Shema Yisrael [as if he were about to die], and that disturbed the class and teachers terribly.” So Greenberg went to the school and – like Ronit, the fictional schoolteacher – explained what epilepsy is to the rabbis, teachers and the boy’s third-grade class. In the end, the child was accepted like anyone else.Greenberg’s assistant, Dana Bar-On, 23, is very soon completing her national service and due to start university. A South African immigrant who was herself diagnosed with epilepsy, Dana is very charismatic. Greenberg seeks a similarly persuasive, self-confident and charismatic young person to replace her and urges candidates to call the center. “I prefer that the candidate has epilepsy or is in a family with the condition, as this will make her very persuasive and motivated,” she added.The center director knows the subject first hand, as one of her four daughters, Neta, had her first epileptic fit at seven months. “It was an infantile spasm. She started to make only two movements, including bending down as if she were a Muslim praying in a mosque. Ninety percent of children with this condition develop mental disability.” But fortunately, she was diagnosed quickly and today, Neta is 11 and healthy. She has not taken any anti-convulsive medication for two-and-a-half years, her mother said.Ella Maletz, who lives in Nataf outside Jerusalem, also knows epilepsy from close up. Her late husband, former Kol Ha’ir editor-in-chief Ehud Maletz, was diagnosed with epilepsy at 35 as a result of brain surgery to remove a benign tumor. But he died in a road accident after coping with the disorder for 15 years.His widow, who was born in Australia and came on aliya in 1972, speaks openly about the scar in his brain that triggered his seizures – as did her husband for years. Ehud wrote an article in his Jerusalem Hebrew-language weekly titled “I Have Epilepsy,” in which he noted that many patients “feel guilty” for their condition and try to hide it. This leads to suspicion and even hostility to people with the disorder, he wrote.“If five known public figures from any field were to appear on a TV talk show and say: ‘I have epilepsy,’ that could trigger a revolution in the way people with epilepsy relate to themselves... Epilepsy should not be a topic eliciting fear, denigration or guilt; it is the key to change. The key is in the hands of people with epilepsy. Let us start to use it.”He also built EYAL’s first Web site.Ella said she knows at least five such famous people who don’t revealtheir condition, but she will not disclose their names. She has donatedmoney for a Kaufmann center program for epilepsy education among Arabpupils in the Negev. It is something that would have pleased Ehud, shesays.The Arab community in general regards having epilepsy in the family assomething shameful that would make it extremely difficult for patientsor healthy relatives to find a marriage partner – just as in the haredicommunity, Greenberg concluded. “It is very hard to get into haredihomes even to explain the disease. I have a set of very modest clothesthat I wear when I do get the chance, but it is very hard to get entry.I would do almost anything to get into the haredi sector and be able totell them about epilepsy, just as our center reaches the generalpopulation. It is a real privilege to do what I do.”
