Women & Epilepsy Conference
by Naomi Hoffenberg, Co-op Student from the York Region Board of Education
On March 22, women from all over Ontario gathered in the Medical Sciences Building at the University of Toronto for the first conference for women and epilepsy . The conference was coordinated by Joanne Mitchell, Dr. MacIntyre Burnham, president of Epilepsy Ontario, and Diane Findlay, executive director of Epilepsy Ontario.
The day began with a keynote speaker on women and epilepsy, Carolyn Bennett, MD, who spoke about the realities of having epilepsy as well as ways to choose a health care system that works for you. Dr. Bennett mentioned an interesting fact: only 5 percent of epilepsy research goes to women and epilepsy. The people who attended were reminded that they, too, could make a difference by pressuring for more research.
Sue Hoffman spoke next about her experience with her pet dog, Swatch. Swatch is more than just a pet; he's a service dog, trained to aid his owner during her seizures or even protect her in public and get help if she is in any danger. Because of Swatch, Sue is allowed to have a more independent lifestyle. Sue's story helped people to understand that there are ways to maintain a relatively worry-free lifestyle, even if you have uncontrollable seizures.
The next topic discussed was Catamenial Epilepsy (epilepsy linked to menstruation), by Nancy Noldy, Ph.D. Tests were shown that seizures usually increase during the first two to three days of the cycle, and then again during days 8-14 of the cycle. Nancy explained that this type of epilepsy can be treated; the removal of both ovaries, hormone therapy, and adjunctive anti-epileptic medication are all effective treatments.
After a short break, Ali Wooding-Webb shared her story of how she grew up with seizures and learned to cope with epilepsy. Even though her epilepsy caused many problems, Ali made sure she was in control of her life. She even found a way to fight off depression by keeping a journal and writing positive things in it every day. Ali's story inspired people to try looking on the brighter side of life, instead of losing hope.
Nancy Mingo, MD, and Heather Edwards, M.Sc., spoke next abut anticonvulsants and birth defects, and epilepsy and pregnancy: seizures and fertility. If uncontrolled, seizures can lead to reproductive dysfunction. Some anti-epileptic drugs may cause delay in foetal development, structural malformations, growth retardation and abnormalities of the brain. It has been proven that women with epilepsy have higher birth defects if they are not on medication, but the medication should also be reduced during pregnancy. Before anything is decided, a doctor must be consulted.
After a pause for lunch, Lorraine Oman-Gaines MD spoke about "Genetics: Will your child have epilepsy?" She explained that the risk of the child having a seizure disorder depends on the cause. If the cause is unknown, there will be a four percent risk. If the cause is genetic, there will be a very high risk. The best way to identify the genetic cause is to look at the patient's medical history and the family's history.
The next two speakers shared their own stories about their children. Nancy Figueroa talked about her son, Jamie, who has been battling seizures his whole life. Jamie is on medication and has even had surgery performed twice, and he still suffers from seizures. Because of Jamie's and his mother's determination, he has managed to go to a regular school and learn in a regular classroom. Jamie's life story is a very brave one.
Ann Farrell spoke next about a tragic incident due to epilepsy. A year ago, Ann's 32 year-old daughter, Judy, passed away in her sleep. In the last year of Judy's life, she began to complain about memory loss, and her friends often had to help her. She also had an increased number of seizures. Her death was caused by Sudden Unexpected Death in Epilepsy Patients (SUDEP). Ann's story taught everyone that life is very precious.
The Women and Epilepsy Conference turned out to be a day filled with sharing, caring, and bonding. When I attended the conference, I finally realized how important it was. I certainly hope there will be more women and epilepsy conferences for many, many years to come.
