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Scholarship Winners Speak About Epilepsy Awareness
The BC Epilepsy Society awarded nine scholarships worth $1000 each to individuals living with epilepsy. Each applicant submitted an essay about their experiences and ideas about how to raise awareness about epilepsy. Below are some of their thoughts.
"Though it may not always be easy, I believe spreading this knowledge to my friends and community is of utmost importance. Ever since I came down with the condition I noticed a need for the public to be more aware of what epilepsy is and of what effects upon both ones psychical and emotional being are; through such awareness, the sort of myths and misinformation that may actually hold someone with the condition back may be dispelled. I have never shied away from my seizure disorder, opening discussing it with my friends and family, and this is undoubtedly the most effective approach to increasing awareness of epilepsy; indeed, first hand information is always the most compelling and is most likely to make an impact."
"Where my parents came from in Uganda epileptic seizures are incorrectly believed to be a demonic possession and even in places where they are aware of what epilepsy is it is sometimes dealt with incorrectly." "These perceptions are the types of misconceptions I wish to change through my work in international development. Though the task of making such changes in BC and in the world is great, I think that it is one which must be done, and the weight of making it happen falls on the youth of today, in partnership with the already existing resources such as BC Epilepsy. Alone I make a small difference in my community, but with the support of organizations, other youth, volunteers, and my education in international development I believe I can make a difference in my global community as well."
"Being diagnosed with epilepsy was a difficult experience for me to go through, given that I had absolutely no prior knowledge of my condition. For approximately one year prior to being diagnosed, I had been having these strange little jerks, like jolts of electricity passing through my body. I also had periods of time where I seemed to zone out and lose my concentration, without having any recollection of it later. Sometimes people thought I wasn't paying attention. My friends always thought it was odd that I would jerk around and some were even scared and did not know what to do." "I believe that raising awareness about epilepsy in my community is very important, especially educating young, elementary school aged children. If I would have learned about epilepsy when I was in elementary school, it would have been an easier thing to cope with when I was diagnosed with it. It is important for children to understand what epilepsy is and how to react if one of their peers is having a seizure, and also if they ever receive a diagnosis of epilepsy themselves it would be less traumatic having knowledge of the condition beforehand."
"To me epilepsy is not a crutch; it is more like a catapult. It has given me the courage to do things I never would have done in the past and to work harder than I ever have before."
Posted by Elvira Balakshin at June 16, 2008 3:15 PM
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New Resource Library Materials Available
The BC Epilepsy Society offers an extensive range of materials in our Resource Library. This includes books, DVD's and videos, comics, CD-R's, games and other materials on a range of issues for different ages. Everything from personal stories from people with epilepsy, general epilepsy information guides for parents and individuals, storybooks for children, employment and transition planning workbooks, and books on complementary and alternative therapies. Materials are available to loan for up to a three week period to current members. Upon request we can also provide free shipping for individuals or organizations outside of the Lower Mainland.
Some new Resource Library additions include:
Epilepsy: A Guide To Balancing Your Life
Author: Ilo E. Leppik, MD
People diagnosed with epilepsy face many difficulties and lifestyle changes, but a proper understanding of the disorder is a vital first step toward maintaining a normal life. Written in simple terms, this invaluable resource answers commonly asked questions about epilepsy and explains how it is diagnosed and treated, both with medications and other treatment options. Filled with helpful tables and illustrations, the guide offers current, reliable information on diet, surgical treatments, pregnancy, sports, and much more.
Edith Herself
Author: Ellen Howard
In this children's novel about a little girl growing up in small town America in the late 1800s, we see a picture of epilepsy as it was treated then. Edith's mother has just died, and her older sister Alena has taken her home to live, along with her husband John, little boy Vernon, and new baby Letitia. When Edith develops 'fits', Alena is terribly concerned and wants to protect her. But John, who is the local school teacher, insists she must go to school. A seizure during her very first week brings on the teasing she has dreaded, but Edith shows her courage and stands up for herself with some help from Vernon and new friend Rosa. This is a short novel, full of wonderfully believable, truthful family relationships, both warm and difficult. "Beautifully written, this is a tale to take its place beside those of Laura Ingalls Wilder".-- School Library Journal, starred review.
We've also added three new resources from the Planned Lifetime Advocacy Network (PLAN). PLAN is a not-for-profit charity created by and for families committed to future planning and securing a good life for a relative with a disability.
A Good Life for You and Your Relative With a Disability
An inspirational guide to rethinking disability and the value of people with disabilities in a caring society. It provides families, caregivers, and those worried about the well being of people with disabilities with insights, stories of inspiration and practical advice. It offers a step by step guide to creating a plan for the future which provides for the safety, security and well being of people with disabilities.
Peace of Mind
An practical and interactive CD-R to help you plan for the future of your relative with a disability. It combines personal stories, testimonials, tips, and worksheets to get you started on your path to peace of mind.
Safe and Secure
A book that offers clear, practical guidance for planning for the future. It provides information relevant to families within the framework of policy, regulations and practice in British Columbia. Safe and Secure includes specific information on BC Benefits and other government benefit entitlements, alternatives to adult guardianship, financial planning, Will and estate planning, discretionary trusts, home ownership and establishing a network of friends.
For more information on these resources, or if you're looking for information about a specific topic or for a particular audience, please contact our office at 604-875-6704 or info@bcepilepsy.com
We'd love to hear your suggestions about other resources and topics to add to our Resource Library!
Posted by Elvira Balakshin at May 21, 2008 12:45 PM
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Camps for Kids
It's that time of year. No matter where you are in the province, whether you're looking at cherry blossoms or melting snow, birds coming back or crocuses blooming, it is undeniably Spring. Thank goodness, right? That means that it's also time for us to start thinking about summer camps, and all the opportunities that are available for kids with epilepsy. These days, there are quite a lot, and they are definitely worth looking into.
Last summer, after I spoke to the kids who had just come back from Zajac Ranch, it was obvious that they'd all had a great time, and that the experiences and acceptance they had enjoyed in that short week would stick with them for months. With those testimonials in mind, it was no surprise for me to read this article from the Associated Press on the rise in camps for kids with chronic conditions, and the great results being seen by facilitators and parents. As the article states, kids benefit from participating in sports and activities that are tailored to their safety needs, and they also get to normalize their condition a bit by meeting other kids who also have seizures, and can relate in a way that no one else can. I especially loved the quote by one little camper saying
'"You get to learn about each other, how you're not different from
everyone," he says. Plus, "It was kind of special because not just
anybody can go there."'
It's not that we want to encourage elitism, but it's nice to hear that kind of pride for a change. I'm interested to see that studies are actually being done on the psychological and behavioural improvements enjoyed by kids who attend camps, since it can take more than anecdotal evidence to gain the funding and resources needed to make these experiences available to more and more kids. In the meantime, the BC Epilepsy Society is happy to offer kids the chance to attend camps around the province, and experience those good times for themselves.
First off, there are the Easter Seals Camps. This will be the first year that we have had an official relationship with this group, and we are thrilled to be involved. Last summer, Elvira, Shawn and I visited their Squamish camp, and with all the ropes courses, organized games, and involved staff, we didn't want to leave. The Easter Seals have camps in Squamish, Winfield, and Shawnigan Lake, so they are accessible from many parts of the province. They schedule week by week all summer based on various guidelines of age and ability, so if you would like guidance regarding the appropriate pick for your child, give us a call, and we will put you in touch. Camp attendance is free on a first come, first serve basis. The applications have been available since the beginning of April, so if you would like to apply, please visit their website, and download a registration form. The BC Epilepsy Society will be offering travel subsidies for camp attendance, so please contact us for more information.
The Zajac Ranch is another great spot for kids with epilepsy. Each summer, they schedule one specific week for kids with seizures, and this year, that will be from July 14th to the 20th. Their camp is in Mission, and it's also full to the brim of great activities and events that would rival any summer camp in the country. In collaboration with the Zajac Ranch, the BC Epilepsy Society is happy to offer subsidies to offset the cost of registration. If you are interested in the camp, please visit their website for more information, and a registration form. To be eligible for our subsidy, please send completed applications to our office, at #510-999 West Broadway, Vancouver, V5Z 1K5. They will be due in no later than 6 weeks before the camp date.
As if these camps weren't enough, through our great relationship with the Epilepsy Foundation Northwest in Washington and Oregon, we have been working out the possibilities of sending some kids down to their great Camp Discovery just outside of Tacoma. Stay tuned for those details! In the meantime, enjoy this warmer weather, think about camps for kids, and get outside, no matter how old you are!
Posted by Kathryn Sykes at April 16, 2008 3:00 PM
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Go Canucks!
The BC Epilepsy Society and 11 lucky kids owe a big thank you to Marcus Naslund and all the staff at Orca Bay for a fantastic experience at the Canucks game on Monday night. He generously donated his private box to us for the evening, so we watched the Canucks beat the Coyotes from the best seats in the house - Nazzy's Suite! It was a great game, so I'm pretty sure we were good luck. We certainly cheered loud enough!
In between hockey, hotdogs, and pizza, the kids also had a chance to get to know each other a bit, chatting about their personal experiences with epilepsy, and their favourite Canucks (I'll always be loyal to Linden). Some of you may have seen my shining moment of stardom - in the first intermission, Tasha Chiu stopped by to profile us for a TV time out. The interview was only about 60 seconds, but the exposure for our Society was great, and I think I was able to squeeze in the important points. Thankfully, I wasn't thinking about how many people might be watching!
This was our second year in Nazzy's Suite, and with his generosity, I hope we'll be able to continue to make it a yearly event. If you didn't get to join us this year, sign up for our eNewsletter so that you won't miss the call for entries next season! In the meantime, Go Canucks, Go!
Team BC Epilepsy, 2008:
Cheering for Naslund and the rest of the team:
Posted by Kathryn Sykes at March 20, 2008 11:00 AM
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Valentine’s Day: Not Just For Lovers!
As Valentine’s Day approaches, remember that this special day
is not just for lovers, it’s for people with epilepsy too. While most people associate St. Valentine with
being the saint of lovers, he actually was also the patron saint of people with
epilepsy.
How St. Valentine became the patron saint of choice is
uncertain. Epilepsy was once known as
the “falling sickness” because some seizures cause a person to lose
consciousness and fall down. One
theorist points out that Valentine sounds much like the German word for
“fallen”. Still other legends propose
that a 3rd century bishop named Valentine von Terni freed the son of
a Roman orator from an epileptic seizure.
Because many people in ancient times believed their medical symptoms
were due to spiritual forces, it made sense for them to combat these perceived
forces with saints. Patron saints in
particular were believed to have restorative abilities for specific conditions.
Today, medical research and an increasing variety of
scientifically proven therapies have helped bring relief to the lives of over
30,000 people living with epilepsy in British Columbia. Valentine’s Day can be looked as a reminder
of this progress, and also highlight the critical need for more awareness,
support, and understanding to improve the day to day lives of individuals and
families affected by seizures.
Posted by Elvira Balakshin at February 1, 2008 2:00 PM
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The Happy Stress of Holidays
At this time of year, with Christmas, Hanukkah, and other family
celebrations approaching, I always remember that an event
doesn't have to be bad to be be stressful. When I think of stress, I
think of being pulled in too many directions at once, and feeling
frazzled and worn out. Even though they are ultimately good things, all
the juggling of
shopping, social engagements, and rich food can really push you to the
limit,
not to mention the tying up of school and work projects before the New
Year.
I love the holidays, and I love being busy and excited, but I know that
I can't enjoy it if I let myself get run down to the point that my
health is compromised. With that in mind, we all need to come up with
some strategies to stay healthy and enjoy the time with family and
friends. Since you know yourself better than anyone else, you know what
your
warning signs are, and what sort of time and situation you need to
recharge. Basically, I'm not telling you to skip the eggnog or the
parties (because that would be criminal); I'm telling you to listen to
yourself, and grab those quiet moments when you can. Make your health a
priority so that you'll have the staying power to see the people you
love, and the energy to whip up your famous butter tarts. Feel free to
bring some of those by the office, by the way!
The key is to take care of yourself, and enjoy this festive season.
Leave a comment and let us know how you're going to do that!
Posted by Kathryn Sykes at December 5, 2007 1:00 PM
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New Faces at the Panel Discussion
At our Ask an Expert Panel Discussion last night, it was a pleasure to see some new faces, catch up with old members, and learn about all the common and specific concerns about life with epilepsy. The evening was a success, as we addressed questions ranging from how to tell a young boy's peers about his seizures, to the complex relationship between seizures and sleep.
Dr. Farrell, a pediatric neurologist, and Kelly McMillan, a nurse clinician, offered thoughtful and thorough answers to many questions regarding the medical issues of epilepsy. As a social worker, I did my best to represent the great resources of our Society and our broader community. I was happy that Shawn and Elvira were there to add their input, as well.
Although Dr. Farrell, Kelly and I were coming from different areas of expertise, all three of us spoke about the need for independence, education, and social support for people with epilepsy. Of course, complete seizure control is always the main goal, but with the large range of issues that may or may not influence a person's health, and their seizures in turn, it is key to take a wider view.
A number of questions through the night related to the lectures we have scheduled for the rest of the series, so Shawn, Elvira and I are happy with our planning! The questions specific to Women and Epilepsy (which may also be of interest to plenty of men) will be addressed in greater detail on January 15th, by Dr. Townsend. In March, we will come back to the issues of Stress Management, and in May, we will round out the series with a presentation on Epilepsy Medications. For details and dates as they become available, please click here. If you didn't make it out on Monday, or if you'd like to discuss any questions of your own, give us a call at 604-875-6704, or email us at info@bcepilepsy.com.
Posted by Kathryn Sykes at November 14, 2007 4:00 PM
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