StartinG Over - Epilepsy

Gender MattersTHE CHILDBEARINGyearsOn average, women with epilepsy have fewer childrenthan women without epilepsy. This may be due to thephysiological and psychosocial impact of epilepsy itself,antiepileptic drug (AED) therapy, or a combination ofthe two. Common issues linked to fertility include: Polycystic ovarian syndrome (PCOS) Early menopause Irregular or no ovulation (“anovulation”) Sexual dysfunctionWhat is ‘Polycystic Ovarian Syndrome’?Women with Polycystic Ovarian Syndrome (or ‘PCOS’)have tiny cysts on their ovaries. The syndrome seemsto appear more often in women with epilepsy than inothers. Signs and symptoms of PCOS include: Unusual hormone levels, including elevated levelsof the male hormone testosterone Irregular menstrual cycles, including irregularor anovulation Excess facial and body hairGender MattersPregnancyFor most women, having epilepsy shouldn’t be a barrierto pregnancy. Dr. Esther Bui, a neurologist at Toronto’sSunnybrook Health Sciences Centre who specializes inepilepsy and women’s health, says one of the biggestmisconceptions about epilepsy is that women with epilepsycannot or should not have children. “Epilepsy should not bean absolute limitation to pregnancy,” Dr. Bui asserts. “In fact,the vast majority [of women with epilepsy] have healthypregnancies and healthy babies”. Studies show that over90% of women with epilepsy will give birth to normal, healthyinfants. However, planning is still important. “Prevention,prevention, prevention,” says Dr. Bui. Women with epilepsyshould talk to their doctor before becoming pregnant andaim to have seizures under control prior to conception. It’sbeen shown that women who are seizure-free for nine monthsor more before becoming pregnant are more likely to remainseizure-free throughout pregnancy.Physicians will make careful decisions with women regardingthe appropriate treatment before, during and after pregnancy,with the aim of controlling symptoms while minimizing risksto both mother and child. It’s important that women keeptheir scheduled prenatal appointments so that seizures,changes to treatment, and the baby can be monitored closely.Some women may be tempted to stop taking their epilepsymedication once they find out they are pregnant. However,women should never stop taking medication without firstconsulting their doctor. The risks to a woman’s health mayoutweigh what she thinks are benefits to her baby.Pre-pregnancyChecklist for Womenwith EpilepsyA pre-pregnancy check-up for a woman with epilepsymay include:oü A discussion of pregnancy risks and precautionsfor both mother and childoü A review of the woman’s current level of seizurecontrol as well as her medicationoü A djustment of the type, dose, and/or number ofantiepileptic medications she is takingoü S upplementing with folic acidü K eeping a diary of seizures and medications andoto watch for any triggers, trends or changesThinking about going on ‘The Pill’?One of the most effective methods of birth control (when used correctly) is oral contraceptionor “the Pill”; however, women with epilepsy need to be cautious. There can be interactionsbetween some antiepileptic drugs (AEDs) and the Pill. In some cases, physicians willrecommend that women use barrier methods of contraception (i.e., diaphragm, spermicidalcream, condom) as backup. If you’re considering going on the Pill, be sure to let your familydoctor know that you’re taking an AED.MenopauseMenopause typically occurs in a woman’s earlyto mid-fifties. Some women with epilepsy – thosewith partial epilepsy and more frequent seizures,for example – tend to enter menopause earlier.The hormonal fluctuations that occur duringmenopause may result in a change in seizurepatterns. “Estrogen levels fall during menopause,”explains Dr. Bui. This means that, for women withcatamenial epilepsy, seizures may improve duringand after menopause. Dr. Bui warns, however, thatjust before menopause, hormone fluctuationsare more erratic. So, some women may initiallyexperience a worsening of their seizures beforethey begin to improve.Hormone Replacement Therapy (HRT)The decision to take hormone replacement therapyis not always an easy one. Women and their physiciansmust weigh the risks of HRT with its potential benefits.In addition, HRT may interact with some AEDs. SaysDr. Bui, “Hormone replacement therapy has estrogen init, and in some women, it may actually provoke seizures.”These issues should be considered and discussed withthe doctor before starting HRT. Bui advises women toinform their gynecologist that they have epilepsy, and,if they decide to go on HRT, to tell their neurologist.That way, any exacerbation in seizures (should it occur)can be better managed.Findings also suggest that epilepsy improvesduring menopause if epilepsy started later in lifeand if seizures have always been infrequent to beginwith. In some women, epilepsy even disappearscompletely when they enter menopause.Menopause may also influence seizures in other ways.For example, menopause can disrupt sleep, and it’sknown that sleep deprivation can exacerbate seizures.If you’re menopausal and troubled by difficultysleeping, speak to your doctor about ways to helpmanage it.“”The best piece of advice I can give womenwith epilepsy is to be proactive about theirhealth. It’s better to anticipate and understandwhat might happen than react to anychanges after the fact.- Dr. Esther Bui, Neurologist,Sunnybrook Health Sciences Centre4Taking Action Against Epilepsy E-Action.ca5

NEWSROOMNEWSROOMEpilepsy ActionDay was held this yearon March 6, 2012 at theOntario legislatureand provided individuals living with epilepsy the opportunityto speak directly to government representatives about themost pressing issues facing their community.Throughout the day, members of the province’s epilepsycommunity, led by Epilepsy Ontario and the Epilepsy CureInitiative, gathered to meet with members of provincialparliament and policy advisors to increase awarenessof epilepsy within government and advocate for theimplementation of an Ontario Epilepsy Strategy. The keytopics of discussion included the impact of epilepsy onOntarians, consistent standards of patient care, improvedaccess to treatment, and disability and employment supports.Epilepsy Action Daycomes to theOntario legislature6Taking Action Against Epilepsy E-Action.ca“This year, the Ontario Health Technology AdvisoryCommittee released recommendations to improve accessto and standardize epilepsy care in Ontario,” said RozalynWerner-Arcé, Executive Director of Epilepsy Ontario. “Westrongly support these recommendations as the foundationfor a provincial epilepsy strategy. On behalf of Ontariansliving with epilepsy, we ask the government to ensure it workswith community epilepsy organizations in implementingthis strategy.”In addition to showing support for these recommendationsat Queen’s Park, community representatives commendedthe government for their support of The Epilepsy DiscoveryProject, an initiative aimed at discovering new therapies andtechnologies to improve the lives of persons affected byepilepsy. While there are still serious unmet medical andsocial needs within the epilepsy community, the researchfunding announcement is “a step in the right direction forOntarians living with epilepsy,” said Dr. McIntyre Burnham,a pharmacologist and director of the Epilepsy ResearchProgram at the University of Toronto. Left to right: Hon. Deborah Matthews, MPP (London North Centre) and Minister ofHealth and Long-Term Care; Rozalyn Werner-Arcé, Executive Director of EpilepsyOntario; Dr. McIntyre Burnham, Board Member, Epilepsy Ontario, Professor ofPharmacology and Director, University of Toronto Epilepsy Research Program;and Hon. Brad Duguid, MPP (Scarborough Centre) and Minister of EconomicDevelopment and Innovation7

NEWSROOMRole ModelWhat are you doing for Purple Day?Stepping out for epilepsyPurple Day (March 26th) is all about raising awareness for epilepsy and givingpeople a great opportunity to help raise funds for their local epilepsy organization.Do you want to get involved, but are stuck for ideas? If so, here are some to getyou started:When it comes to fundraising, it’s hard totop Edmonton Epilepsy Association (EEA)supporters! Bake sale- Who can say “no” to delicious purple frosted cupcakes that help a worthy cause? Run/Walk- A themed run can help raise funds and raise epilepsy awareness. Local runningstores and media outlets can help you advertise and spread the word! Information booth- Set up a booth at your work, office or school with educational materials aboutepilepsy.Hon. Geoff Regan, MP forHalifax West, and Cassidy Megan,Purple Day founder.8Edmonton Epilepsy Association’s Gary Sampleyshares his strategy for the organization’s successJust two years into retirement, Gary Sampley was looking for a challenge – and for this formermilitary officer, it wasn’t going to come from lawn bowling or golf.Great work everybody!Gary SampleyPurple Day climbs to new heightsOn June 28, 2012 their perseverancepaid off and the federal Act representingPurple Day, Bill C-278, received Royal Assent.The passing of Bill C-278 legally establishesMarch 26 as Purple Day in Canada, wheneach year Canadians wear purple to promotea greater awareness of epilepsy andsupport the 300,000 Canadians living withthe disorder.Progress through Patience23 purple-clad members of “Team EEA 2012”were among 34 charities that took part inEdmonton’s annual Roy Financial Mayor’sWalk for Charity, and the results werespectacular. Over 9100 was raised, whichwill go towards funding for EEA programsand services. Bowl-a-thon- Bowl for a cause! Speak to your local bowling alley and find out how youcan get the ball rolling.Since its official launch in 2009, PurpleDay for Epilepsy has grown by leaps andbounds to help reduce stigma and empowerindividuals living with epilepsy to take actionin their communities. During this time, PurpleDay founder Cassidy Megan and scores ofepilepsy awareness advocates from acrossthe country have worked tirelessly to raiseawareness about the disease.Purple-clad EEA volunteers take part in Edmonton’s annual Roy Financial Mayor’s Walk for Charity.Hon. Geoff Regan, MP for Halifax West, wroteThe Purple Day Act in late 2008. “The swiftpassing of this Bill is a meaningful show ofsupport for Canadians living with epilepsyand their families,” said Regan.“I am so grateful that Mr. Regan andParliament believed in me and Purple Day,and showed Canadians living with epilepsythat the government cares and that we arenot alone,” said Cassidy Megan. “I also wantto thank the Epilepsy Association of NovaScotia and the other member agencies ofthe Canadian Epilepsy Alliance for helpingmake my dream come true.”Taking Action Against Epilepsy “I’m notin this forpersonalrecognition.I’m herebecause Ilike whatI’m doing.”E-Action.caThe Edmonton Epilepsy Association (EEA) wassearching for an Executive Director who couldbring the organization out of deficit and securenew sources of funding for its programs andservices. Though Gary knew very little aboutepilepsy at the time, what he did know was that ithad an unfair stigma attached to it that was rootedin ignorance and fear. Brought up to be “firm, fairand friendly,” Gary knew he had to work hard tochallenge this perception.Gary became Executive Director and ChiefOperating Officer of the EEA two years afterretiring and made it his mission to educate andadvocate for people who might not always feelcomfortable speaking for themselves. And so far,for Gary, this has been “mission accomplished”.Gary, his staff, directors and volunteers at theEEA have introduced several new programsaimed at educating and enabling people livingwith epilepsy. Some of these initiatives include:Collective Kitchen, a cooking class for people withepilepsy; Be Your Own Boss, a program for teenswith epilepsy that encourages independenceand inspires confidence; and Kids on the Blockeducational puppet presentations for elementaryschool students.Gary’s proudest accomplishment so far hasbeen a series of educational booklets on epilepsy.The booklets are provided free of charge toepilepsy associations, hospital epilepsy clinicsand neurologists’ offices across Canada, but canalso be downloaded from the EEA website(www.edmontonepilepsy.org). Downloads exceedan astonishing 6,700 per month, and come from143 countries around the world.How does Gary manage to secure sponsorship forprograms such as these? “Just do things patiently,”he says, as if it’s second nature to him. For everynew program, the EEA seeks funding from a localsponsor. This approach requires more patience,but the sponsors get to see the fruits of theirphilanthropic efforts, which in turn entices themto continue giving.“Firm, fair and friendly” are the words Gary hasused to sum up his leadershi

epilepsy and women’s health, says one of the biggest misconceptions about epilepsy is that women with epilepsy cannot or should not have children. “Epilepsy should not be the vast majority [of women with epilepsy] have healthy pregnancies and healthy babies”. Studies show that over 90% of women with epilepsy will give birth to normal, healthy