Women and Epilepsy
by Dr. Venita Jay, Bloorview Epilepsy Research Program, University of Toronto
Women and Epilepsy was a one of a kind conference hosted by Epilepsy Ontario on 22 March 1997 at the University of Toronto as part of events commemorating Epilepsy Awareness Month. The conference was the first of its kind in Canada and drew an impressive audience, not only from Ontario, but from as far away as Newfoundland.
Such a conference was timely and long overdue. Based on figures from Epilepsy Ontario, approximately 600,000 Canadians are affected by seizure disorders and about a half of these are women. So why is there a special need to address the issue of women and epilepsy? The issues are two-fold: There are those pertaining to women with epilepsy, and those pertaining to mothers who are caregivers of children with epilepsy.
Women with epilepsy are apt to encounter trying situations relating to their independence and self esteem, and have to address difficult questions when it comes to pregnancy and childbirth. Whether as a caregiver or as an individual with a seizure disorder, being a woman adds an extra dimension to the problem. There are expectations not only from the women themselves, but also from their families, their workplace and the society at large.
Both women with epilepsy and mothers of children with epilepsy have unique problems and need answers on how to deal with the additional challenges that the seizure disorder has brought to their lives. As Dr. McIntyre Burnham, Conference Chair and President of Epilepsy Ontario, pointed out, "This conference is a forum for discussion, and our focus is not only on providing information, but also on offering a chance for women to share experiences and to learn from each other." And to this end, this conference was a great success and provided a wonderful forum for a lively interaction between mothers, women with seizure disorders, doctors, psychologists, researchers, teachers and counsellors.
As a physician, I have attended a great many medical conferences and have always been in dread of an all-day event, which is packed with a wealth of overwhelming medical information, leading one to the heights of mental and physical exhaustion at the end of the day. But this conference was quite the contrary, with its lively, interactive format, featuring talks not only from health professionals and researchers, but also a significant component of audience participation as well as real life experiences of patients and mothers. I learned a great deal at the end of the day, and I am sure, my sense of optimism would be shared by all, who were in attendance.
The conference was well paced, with timely refreshment breaks, which also allowed for closer interaction between all registrants - patients, mothers and professionals alike. The event was generously sponsored by Hoechst Canada Inc., with contributions of juice and food from Sunpac and Victoria Fine Bakeries.
The keynote speaker, Dr. Carolyn Bennett, well known to TV audiences as Doctor on Call, is recognized as one of Canada's leading practitioners of consumer-focused health care. An assistant Professor in the Faculty of Medicine at the University of Toronto and Women's College Hospital, Dr. Bennett's focus is not only on diagnosis, treatment and prevention of disease, but also directed to critical issues such as delivery of service. With her `no-nonsense' approach to health care and her passionate advocacy of patient rights, Dr. Bennett has a loyal following in Canada.
Dr. Bennett was indeed a most animated speaker and congratulated the organizers on putting out a beautiful brochure. "The real celebration today is not just the conference... Only 5% of the research dollars go specifically to research on women and women's health issues. We need to address the 'bigger picture' - What is it to be a woman in the context of epilepsy?" She spoke of how being a woman meant "all things to all people"; how women go through life cycle glitches (menses, pregnancy, breast feeding, menopause); how women were mortals, also subject to stresses; how an overstressed body would manifest with signs such as a sense of loss of control with fatigue, and a variety of symptoms like headache, backpain etc. She spoke of how it was critical to deal with escalating frustration and fighting depression. "If you don't get mad, you get sad!". She stressed on the need to deal with these frustrations, to have the healthcare system working for oneself in terms of picking a `coach', who would be attentive and act as a partner to problem solving, and with whom one felt comfortable sharing and openly talking about a problem. She highlighted a number of issues women are apt to encounter from healthcare professionals. Women must give themselves time to make the right decision; the ultimate decision is that of the patient or parent, and they have the right to ask all the questions and get all the answers. There are clearly tremendous expectations on mothers, who not only have to look after the child with seizures, but care for the whole family and when one throws a working mother into the equation, she is expected to perform duties both at home and at work. Dr. Bennett eloquently summed up the problems women encounter today, both as patients or as mothers of children with a seizure disorder, and stressed the need to continue to pressure for more support to improve quality of life and security for women.
Sue Hoffman and her companion, Swatch, were favorites with and no strangers to this audience. A mother of two children, Sue started to have complex partial seizures around 12 years of age, but these went unrecognized and seizures returned during her early 20s with a vengeance. The seizure disorder affected her independence and she was often hospitalized and spent a great deal of time at home. One day, when she was outside with her two toddlers, she had a seizure. A passerby bent over and stole her purse while pretending to help her. Sue realized that she needed to find a way to protect herself and her family and found a special skills dog, Seiko, trained for her specific seizure type. Seiko would stand on top of Sue when she had a seizure and protect her and could recognize people in uniform, such as ambulance attendants. Seiko also developed the ability to sense and forewarn Sue prior to the occurrence of a seizure. Seiko completely turned her life around and helped her to avoid many accidents such as falling down the stairs. Now, Sue is training another dog, Swatch, herself, and teaching him commands and cues. Her talk prompted a barrage of questions from the audience and Sue informed them of a nonprofit organization, Key Companions, from which they could obtain more information about service dogs.
Ali Wooding-Webb spoke of her personal trials and triumphs in growing up with seizures. Ali is now a teacher focusing in special education with the Lennox and Addington school board. An outstanding public speaker, she recounted her childhood days when she was harassed, threatened and even attacked at school; how she would hide the truth from her parents in order not to add to their guilt and how they would protect her, in order not to hurt her. She recalled the days when she felt, "She didn't fit in and that she was a bit deficient", as academic assessments from school suggested that she did not apply herself or did not work hard. Having overcome a lot of problems and settled down to a job in her early 20s, she recalled the day when seizures struck again. This changed her life. At this point, she was no longer afraid to say, "I need help: I don't understand what is happening to me". This was her important message to the audience: "Support groups are not for the weak or wimpy people; they are an incredibly empowering experience. I have epilepsy because I am plain human." Ali became involved with the local epilepsy associations and other causes and cannot stress enough that "dealing with the issue is of critical importance and covering up the truth is destructive".
Nancy Figueroa spoke about her experiences of taking care of a son with a seizure disorder. A newspaper reporter and mother of three children, she recalled her experiences in caring for her son. She spoke of healthcare and educational aspects and stressed on how parents have to learn to be assertive. She proudly recalled the moment, when her son won the "hardest working primary student" award. Her talk sparked much discussion on the experiences and frustrations of several parents with the school system and the issues of parental input and rights. Nancy discussed the benefits she derived from attending sessions of the Bloorview Parents' Group.
Ann Farrell spoke with much pain and emotion of her personal tragedy with SUDEP (Sudden Unexpected Death in Epilepsy), a subject she had not been aware of until the loss her own daughter. Three of five children of this award-winning journalist and former president of Epilepsy Metro were diagnosed with epilepsy. Ann's youngest daughter died in 1995 from SUDEP. The exact cause of SUDEP remains undetermined, and research on this topic has been limited. Ann stressed the importance of close clinical monitoring and proper compliance with medication in patients and informed the audience of a recently established support group, Epilepsy Bereaved, in England. She reiterated the utmost importance of greater patient and parent education of such aspects of epilepsy and invited audience participation in forming similar support groups in Canada.
Nancy Noldy, a psychologist and assistant professor at the University of Toronto spoke about the intriguing association of seizures with phases of the menstrual cycle. The definition of Catamenial Epilepsy is controversial: thus, the data on its prevalence is different in various studies. Dr. Noldy presented data from various studies addressing this association and is herself embarking on a project to objectively analyze seizure patterns in relationship to the cycle. Those wishing to participate in her study, (which incorporates, a 6-month seizure diary and recording basal temperature), may contact her.
Heather Edwards of the Toronto Hospital and Nancy Mingo, a researcher with the Bloorview Epilepsy Program as well as family practitioner, gave a combined presentation on the complex issues of fertility, infertility, pregnancy, childbirth, fetal well being, birth defects and genetic implications of epilepsy. Lorraine Oman-Ganes, a clinical geneticist from The North York General Hospital, explained the basic principles of genetically inherited disorders and implications for epilepsy. Readers wishing to obtain more specific information may contact Epilepsy Ontario.
Three afternoon workshops featured specific issues relating to epilepsy, including medical aspects, learning and memory, and mothering an epileptic child and behavior problems. Learning and Memory Problems was presented by Dr. Mary Lou Smith, psychologist at the Hospital for Sick Children and Associate Professor at the University of Toronto. Management of Difficult Seizures was discussed by Dr. Rosalind Curtis, Pediatric Neurologist and Head of Epilepsy Program at Bloorview MacMillan Centre. A combined presentation on Mothering a Child with Epilepsy and Childhood Behavior Problems Secondary to Epilepsy, were offered by Lucy Lach, medical social worker at the Hospital for Sick Children, and Toni Mantini-Atkinson, a psychologist with a focus in breakthrough play therapy. These proved to be most informative and illustrative for the audience.
While not on the agenda, questions from the audience prompted a small presentation from Yvonne Graeves-Bell of Epilepsy Ontario, who spoke of one's rights at the work place. She told the audience of an informational pamphlet, Epilepsy & Employment, published by Epilepsy Ontario. "Remember, You have rights!" You can call Epilepsy Ontario or Epilepsy Association ofMetro Toronto if you have questions in this regard.
Dr. McIntyre Burnham, whose vision led to realization of this successful venture, started the proceedings humorously referring to himself as "the token male" of this conference. Diane Findlay, Executive Director of Epilepsy Ontario, was in attendance, as were Joanne Mitchell and Alla Vilner who helped to coordinate the day's events, with the assistance of John Phair. Dr. Nayyar Khayyam (on other days, a researcher with Dr. Burnham) proved invaluable as videographer and audiovisual assistant for the conference.
At the end of the day - and I think I can speak for many in the audience - the Women and Epilepsy Conference certainly raised our awareness of unique and specific problems that women encounter when faced with a seizure disorder, both as a patient or as a parent. The challenges are many, and the first steps are to recognize, acknowledge and address them. We must learn from each other and share our insight and experiences. While Epilepsy Ontario has taken this first step, we must continue to pressure for more support and momentum for this crusade.
Tapes of the conference are available to borrow from Epilepsy Ontario.
Other Contact Numbers
Bloorview Parents' Group 416-978-0779.
Key Companions 905-857-9547
Dr. Nancy Noldy (Catamenial Epilepsy) 416-603-5800 x 2173
SUDEP Support Group,
at the Epilepsy Association of Metro Toronto:
416-964-9095
416-964-2492 fax
email: info@epilepsy.toronto.on.ca
