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Epilepsy Foundation of Connecticut, Inc.
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Family starts first support group for epilepsy in Stamford By Devon Lash Posted: 06/13/2009 10:32:46 PM EDT Updated: 06/14/2009 07:27:04 AM EDT
STAMFORD -- Sarah Harris, 16, finds that made-for-TV seizures are nothing like the real thing. "Seizures look easy on (the TV drama) 'House,' " said Sarah, who lives in Pound Ridge, N.Y. Sarah, whose epilepsy has made her a reluctant expert on the subject, quickly followed the statement with a warning: "Not that I want people feeling sorry for me," she said. "It's my No. 1 pet peeve." Sarah spoke unabashedly about life with epilepsy -- the diagnosis when she was 12, the musical chairs regime of medication, the four surgical procedures, the severe infection she developed, and her worst moment. "I had to have all my hair shaved off. I had highlights," she said, fingering her silky bob cut. "It was right after Britney (Spears) did it. So people would say, 'Why did you shave your head? To be like Britney?' " She doesn't even like the singer, she said. She chose to donate her hair to Locks for Love. Her mother, Louise, who has been Sarah's health care advocate, pharmacist and hospital roommate, chimed in quietly: "We were worried about her dying and she was worried about her hair." National Epilepsy Foundation defines epilepsy as a seizure-producing disorder that affects mental and physical functions. When a person has two or more seizures that person has epilepsy, according to the foundation. There is no cure, though brain surgery can be a form of treatment. According to the foundation, more than 3 million people in the United States have epilepsy, including more than 60,000 people in Connecticut. The Harris' openness about the illness and its effects are rare in the epilepsy community, advocates say. "It's part of our problem -- people with epilepsy are more reluctant to speak up because they are embarrassed," said Linda Wallace, executive director of the Epilepsy Foundation of Connecticut. "There is still that stigma attached." It is time, the Harris family decided, to change the stereotype. On Monday night, Louise will help lead the first support group for people with epilepsy or their family or caretakers at Stamford's Ferguson Library. The members of the group hope to continue to meet on the third Monday of each month. "We have tried like crazy to find support groups," she said. "But they are either in Manhattan or across the Tappan Zee [Bridge]." Patrick Danis, the foundation's program coordinator, said there are four support groups in the state: Milford, Bethel, Farmington and Middletown -- an average number compared with other states. "It's just sitting down with people and hearing them out," said Bob Fiore, a member of the Milford group and one of the foundation's volunteers. "No matter what the focus is, it is epilepsy." Fiore said a lot of people have trouble talking about the condition because of attitudes some people hold. Years ago, he said he told a serious girlfriend about his condition. "I told her I had epilepsy and when I asked when I could see her again, she said she was busy," Fiore said. "I understood -- she just didn't want to deal with it." Sarah Harris said while once riding the bus to school, she had a seizure and classmates just laughed. "Some of my friends couldn't handle it, and some really stood by me," she said. There were hopes to start more groups in the state, Wallace said, but the elimination of state funding will likely make that impossible. State dollars, which have vacillated between $25,000 and $55,000 in the past decade, were cut for the next two-year budget cycle, Wallace said. Though there are other funding sources that comprise the foundation's $300,000 annual budget and the General Assembly is still in special session, Wallace is preparing for the worst. The foundation is looking for a new office; there is some consideration of "restructuring" the two existing employees; the number of children with severe epilepsy the foundation sends to the weeklong summer camp in Hebron was reduced; the program training EMT and police on dealing with seizures was eliminated, and the office's two employees will have to restrict travel expenses, Wallace said. "It's horrible," she said. "The more time we have to spend raising money, the less time we can spend on programming." The foundation will continue to exist mostly on grants, fundraisers and contributions from community health charities and the annual appeal. Yet miles away from the legislature Monday at Ferguson Library, willing participants have a glimmer of hope. Louise Harris, and her daughters Sarah and Julia, have stuffed and hand addressed 119 envelopes to local pediatricians, neurologists, neurosurgeons and family practitioners to publicize the group. While Sarah's story has a happy ending -- a resection surgery on her right temporal lobe has greatly reduced the intensity and frequency of her seizures -- the condition had a great effect on the family. "This changed all of our lives," said Julia, Sarah's younger sister. "Our family goal now is to help other families who have someone they love with epilepsy." -- Staff Writer Devon Lash can be reached at 964-2242 or devon.lash@scni.com. http://www.stamfordadvocate.com/localnews/ci_12586649
News from our National Office FDA’s Public Health Advisory on Suicidal Thoughts and Antiepileptic Drugs Dec. 18, 2008--The FDA is issuing this advisory to inform the public of the results of our completed review of clinical trials to see if patients who took antiepileptic drugs had more episodes of suicidal thoughts or behaviors than those who did not take one of these drugs. The review included clinical trials for eleven drugs that are a part of a class of drugs (antiepileptic drugs) used to treat epilepsy, psychiatric disorders and other conditions. In these trials, patients who took one of the antiepileptic drugs either alone or as part of a combination had almost twice the risk of having suicidal thoughts or behaviors compared to patients who did not take one of the drugs. This increase in the risk of suicidal thoughts or behavior represents the occurrence of about one additional patient experiencing suicidal thinking or behavior for every 530 patients treated with an antiepileptic drug. This increased risk was seen as early as one week after starting treatment and continued for the entire length of treatment time in the studies we reviewed. In January of 2008, FDA issued an alert to healthcare professionals communicating the initial results of its analysis of the data. This analysis was also discussed at a public Advisory Committee meeting in July 2008. In keeping with our commitment to provide the public with drug safety information as it becomes available, we are issuing this public health advisory to inform you of the final results of our analysis and our decision to require that companies who make antiepileptic drugs change the labeling for these products to include Warnings and Information to Patients about the increased risk of suicidal thoughts and behaviors. The companies that manufacture antiepileptic drugs will also be required to develop special patient labeling called a Medication Guide to provide patients with information about the risk of suicidal thoughts and behaviors and the signs and symptoms to look for. After the Medication Guides for antiepileptic drugs become available, patients should receive one each time a prescription is filled. Patients, caregivers, and healthcare providers should be aware of any signs of worsening depression, any suicidal thoughts or actions and any unusual changes in behavior. Some of the common warning signs for risk of suicidal behavior are:
Patients, family members and caregivers should pay close attention to any unusual day-to-day changes in mood, behavior and actions. These changes can happen quickly so it is important to be mindful of any sudden differences. If you notice any of these signs or if any new and worrisome behaviors occur, contact a healthcare professional immediately. Do not stop taking these medicines without first talking with your healthcare professional. Stopping these medicines suddenly can cause serious problems. The FDA asks health care professionals and caregivers to report possible cases of suicide, suicidal thoughts and behaviors in patients taking antiepileptic drugs; patients who experience any of the warning signs above and are taking any of these drugs should also report to the FDA through the MedWatch program by phone (1-800-FDA-1088) or via the Internet at http://www.fda.gov/medwatch/index.html. New Epilepsy Treatment Receives FDA Approval Congress and President Restore the Promise of the Americans with Disabilities Act
Scientists shed light on causes of epilepsy November 24th, 2008 Yahoo-News Check out this clip from November 2007 from the Fox 61 News @ Ten. Dog calls 911 after owner has seizure The German shepherd remembered his training and saved his owner's life When Medication didn't help, surgery saved these 2 local people from a lifetime of debilitating seizuresby Carrie MacMillan Republican American Saturday, February 23, 2008 Epilepsy & Behavior Previous research on driving and epilepsy has focused primarily on determining predictors of who will continue to drive when told not to. An analysis of health behavior attitudes and beliefs in persons with epilepsy may provide insight into effective patient counseling. A three-page, 46-item questionnaire was adapted and completed by 213 respondents with epilepsy. Nineteen percent indicated that in order to drive, they were not completely honest about their seizure frequency. Twenty-six percent reported having had a car accident because of a seizure. On Safety Concern, Attitudes toward Driving, Perceived Severity/ Susceptibility, Perceived Barriers, Helping Relationships, and Self-Efficacy, there were no significant differences with respect to gender or place of residence. Respondents indicated that being in good health and taking precautions were important to them. Predictors of driving behavior included race/ethnicity, employment status, dishonesty about seizure frequency with the doctor, Attitudes toward Driving, perceived Severity/Susceptibility, Perceived Barriers to changing driving behavior, and Self-Efficacy. Recommendations for communication strategies are discussed.
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Epilepsy Foundation Professional Advisory Board Members Respond We at the Epilepsy Foundation feel that the FDA’s recent announcement linking suicidal thoughts with antiepileptic drugs should not cause anyone to become frightened about taking their medications. Reacting to the FDA’s warning by abruptly stopping an antiepileptic medication could be extremely dangerous. We encourage patients and family members who may have any concerns on the FDA alert to call their doctor, but never to stop their medication on their own. It is important that people with epilepsy and their families understand that the relationship between epilepsy and suicidal risk is complex and, in most cases, people who develop suicidal ideation or display suicidal behavior are known to have suffered from a history of depression or other psychiatric disorders, as well as to have a family psychiatric history. Individuals taking antiepileptic medications can feel reassured by a number of factors. Since depression is relatively common in epilepsy, we don’t know for sure if some individuals had suicidal thoughts that were not in fact caused by the medications. We need to get much more information about how these statistics were derived. In fact, the American Epilepsy Society has raised serious concerns on the methods used by the FDA in the meta-analysis that led to the alert. Even if medications do raise the risk, this risk is extremely low. The risk of developing this problem after long-term use of a drug is probably especially low if a person has been feeling fine up until now. The Epilepsy Foundation has always supported the idea that health care providers need to spend time looking for and talking about depression with their epilepsy patients. We hope that the main impact of the recent FDA announcement will be to reinforce the value of good communication between patients and their health care providers. Page B. Pennell, M.D., Director, Emory Epilepsy Program. Dr. Pennell is Chair of the Epilepsy Foundation’s Professional Advisory Board Bruce Hermann, Ph.D., Professor of Neurology, University of Wisconsin School of Medicine and Public Health. Dr. Hermann is the immediate past Chair of the Epilepsy Foundation’s Professional Advisory Board. Andres M. Kanner, M.D. Professor of Neurological Sciences, Rush Medical College Director, Laboratory of Electroencephalography and Video-EEG-Telemetry and Associate Director, Section of Epilepsy and Rush Epilepsy Center, Rush University Medical Center. Dr. Kanner serves on the Quality of Life committee of the Epilepsy Foundation’s Professional Advisory Board. Alan Ettinger, M.D., Vice-Chairman, Department of Neurology, LongIsland Jewish Medical Center (LIJMC); Professor of Clinical Neurology, Albert Einstein College of Medicine; Director, North Shore–LIJ Comprehensive Epilepsy Centers and Chief Division of EEG andEpilepsy, LIJMC. Dr. Ettinger serves on the Quality of Life committee of the Epilepsy Foundation’s Professional Advisory Board. Brian Alldredge, PharmD, Professor of Clinical Pharmacy & Neurology; Associate Dean, Academic Affairs, School of Pharmacy, University of California, San Francisco. Dr. Alldredge serves on the Research Council committee of the Epilepsy Foundation’s Professional Advisory Board. |