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Epilepsy Outreach NewsEpilepsy Outreach & Emmett Featured in Pioneer PressFebruary 28, 2008 By Joanna Broder
During the past six months of guarded relief, Emmett's parents, Erin and Patrick Leyden, and Patrick's sister, Ann Marie Clancy -- who often cared for Emmett during the thick of his seizures -- started the American Epilepsy Outreach Foundation, a 501(c)3 nonprofit organization dedicated to raising awareness about epilepsy and providing support to people with the disorder and their families. Their Web site is www.epilepsyoutreach.org. In people with epilepsy, a neurological disorder, seizures can result when the brain produces a sudden surge of electrical energy that interrupts brain functions. More than 3 million people in the United States have epilepsy, according to the foundation. In about 30 percent of cases, doctors can pinpoint a cause -- a brain tumor or a head injury, for example -- but in the majority of cases, there is no known cause. The disease can be particularly troubling because in 30 to 40 percent of cases the person has seizures that persist despite treatment. Such was the case for Emmett. Family suffers, too Although the Leydens are close to their neighbors, who have been supportive, they didn't fully grasp the extent of the nightmare the Leydens were dealing with behind closed doors, Erin said. It is the family's hope to educate the public about what it's like to care for someone with uncontrolled seizures. That it is nonstop, worrisome and depressing. On the foundation's Web site is a section profiling the experience of families living with epilepsy in the Chicago area. The hope is to have people learn from the stories of others. Maybe a family will learn of a treatment option they had not been aware of, Erin said. Before going to the epileptologist last summer, the Leydens watched their young son suffer. There were days when Emmett would have between 100 and 200 seizures. Some days Erin would spend the entire day holed up inside the family's home, restraining Emmett in a special chair so he wouldn't harm himself as his body lost control. Increasing the safety of epilepsy patients is another goal of the family's foundation. Sense of security Even though Emmett is seizure-free today, he is not out of the woods: Felbatol is known to put a person at much higher risk for aplastic anemia, a condition in which the bone marrow stops producing enough new blood cells. If Emmett developed the disease he would be at much higher risk for infections and uncontrolled bleeding. Emmett must get his blood monitored every week. For now there are no signs of the disease. It's a risk the family has to take to avoid Emmett crashing into household objects and hurting himself, Erin said. "It was such a devastating situation, and we never knew it could be so bad," said Clancy, Patrick Leyden's sister, who used to go to the family's house everyday to help care for Emmett. Clancy said she hopes their foundation will help people with epilepsy develop a sense of community. This article is a reprint from The Pioneer Press |
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Almost 25 percent of those who have a stroke will develop epilepsy Dr. Roy Sucholeiki, MD |
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Four-year-old Emmett Leyden has a rare form of epilepsy called Doose Syndrome, and can have "drop seizures" where he falls down without warning and goes into convulsions. After numerous doctor visits and failed treatments over the course of 15 months, Emmett, of Chicago's Norwood Park community, began treatment with the anticonvulsant drug, Felbatol, and has been seizure-free since July 2007. Felbatol is a drug of last resort for epilepsy because it can cause serious side effects. Emmett Leyden, 4, of Chicago's Norwood Park community, used to suffer as many as 200 epileptic seizures a day, but has been seizure-free for six months thanks to a "drug of last resort" for epileptics.