Estories

 
I was only nine when I had my first seizure and I’d never heard of epilepsy. My mum insisted I see an epilepsy specialist as my behaviour on the medication I was prescribed was so out of character that she knew the drugs were the cause of it. I now take newer anti-epilepsy medications to control my condition. Now instead of having up to 15 seizures a day I have one or two a year, when I’ve got a cold or feeling a bit under par. I’ve still got a lot to cope with as I get older, for example, I’ll have to be careful with alcohol. I could have a few drinks but I’ll always have to be aware of my limit.
If I got very drunk I could have a seizure. Luckily the drugs I’m on now don’t interfere with the contraceptive pill if I decide to use this in the future.
My advice to other people with epilepsy is not to be ashamed. Get as much information about the condition as possible. Don’t be fobbed off by your GP, demand to see an epilepsy specialist.

 
 I had my first seizure when I was 12 which was a difficult time when I had just started high school and wanted to be more independent – going shopping on my own and the cinema and parties with my friends. It was difficult for my parents too – to set their mind at rest they gave all my teachers a sheet about what to do if I had a seizure and I started wearing a ‘Medic Alert’ bracelet explaining my epilepsy and a number to ring. The epilepsy and the medication have affected my short and long term memory and I felt like instead of revision, I had to learn everything all over again for my GCSEs – I’m now studying art and design and hoping to study graphics at university.
 
 When I was a teenager, I was given the medication sodium valproate and suffered the symptoms of polycystic ovary syndrome – acne, weight gain, irregular periods, and the side-effects have got worse as I have got older. I think you should be told in your teens how the drugs you are on could affect you. Now, at age 27, the process of changing medication could affect my job if I experience breakthrough seizures. It would have been so much easier to change treatments when I was a teenager at home with the support of my family. I wish I knew then what I know now.

 
I would like to stress to teenagers with epilepsy, please stop and consider contraceptives before you take the chance of becoming pregnant – life as a teenager is difficult enough as it is without this possibility. It is so important that you speak to your GP about your anti-convulsant medication and contraceptives, as some do not work together.



I am an Author or Epilepsy Nepal from Nepal, motivated student for study as an Epilepsy patient. I studied hardly till BA in Major English and Sociology. I appreciate and love the people who are suffering from epilepsy. Bloody epilepsy is not a disease it's only a disorder in brain and i have designed blog for those people who has experienced epilepsy either from them self or from their children. If I have to talk about my education i have studied till MA and i am interested in engaging in computer and blogs and websites. my educational background and working experience in the field of Teaching, I strongly believe that even a epilepsy having people can read write and work as other normal people. The people who has epilepsy do not think that by having epilepsy you are being psychologically disable.

Since I was 3 years old I am having medicine and now I am 27 years old. In Nepal, Epilepsy patients are hatred too much. They won’t get any opportunity.  We have to hide our illness and live a life like normal but as a Epilepsy patient we cannot be normal because every doctor says that it cannot be completely treated but  can be controlled.

Since my high school days I had studied and i was epilepsy free but as i have grown up my epilepsy goes up and down. so i have created this blog for motivating people to give my experience and supporting them who are with epilepsy. I should not struggle for the study even for the money because my family loved me each and every step of my life so that i am able to study till now. I took jobs and study together and lived a normal life. I had strong interests for the issues regarding studies and activeness although I had Epilepsy. I cannot give here my full introduction because in Nepal people with epilepsy cannot live if neighbors and friends know show that more than this. Sorry for your inconvenience and i did not attach my picture due to this reason.

I personally believe that every person having epilepsy should not worry because it will be controlled with medicine like mine.  so i request every people having epilepsy do not worry. you also can live normal life like others. if you have any question please do comment on the box and share your experience. or you can directly contact me in my  email address.

'I can't remember my wedding day or the birth of my first child' 

 

Mark Kellaway, from Basingstoke, found out he had epilepsy at the age of 26. He hadn’t realised he was having seizures, but the diagnosis has had an unexpectedly positive effect.
“I think I’d had epilepsy for a while before I realised anything was wrong. It wasn’t until I moved in with my girlfriend Ruth, who is now my wife, that she noticed it and made me see a doctor.
"At first I thought she was joking. I’d been living with my parents and they hadn’t noticed anything. I think they just thought I was occasionally being odd or drifting off.
“I have left temporal lobe epilepsy with complex partial seizures. I go blank, stare into space and dribble. I don’t respond to anything. I'm not aware it's happening. Apparently it lasts about one minute.
"It normally happens in the evening and at night when I’m asleep. Ruth says I make strange sounds, worse than snoring.
“Sometimes I feel a bit odd afterwards, similar to the early stages of being drunk. I can carry on doing normal tasks, but later on I'm surprised that I've done them. I'm not aware that time has passed. How often the seizures happen varies, but on average it's once or twice a week." 
“The GP tested my blood sugar levels and didn’t find anything. I decided to see a second GP. He immediately said it seemed like epilepsy. He sent me for a variety of tests, including an EEG (electroencephalogram) to monitor my brain activity.
"I was shocked to hear that it was epilepsy. I thought people with epilepsy fell on the floor and wriggled about [a tonic-clonic seizure]. Like most people, I didn’t know that there were other forms.
"I've had one tonic-clonic seizure, about six months after my diagnosis. It was the day after my stag party. I was eating out with my parents and close friends and, just as our food arrived, I had a seizure. I fell unconscious on the floor and was taken to hospital in an ambulance." 
“The diagnosis had a huge effect on my life. I started taking medication to control the seizures and I stopped drinking alcohol. But the biggest change was losing my driving licence. You can’t drive if you have epilepsy.
"At the time I drove 25 miles every day to my job designing a website for a charity. I tried public transport but it involved a bus, two or three trains and a lift from colleagues. They were all very helpful but it was too hard, so I left my job.
“This turned out to be positive because it meant I became a stay-at-home dad, which I love. Ruth was pregnant when I left my job. When our daughter was born we had the first four months at home together getting used to life with a newborn baby.
"I was very scared the day before Ruth went back to work. Looking after the baby on my own felt like a big responsibility. But it was fantastic. We already had a daily routine, so I knew what I needed to do and when. I took the baby out as much as I could, mainly for walks. My daughter is now five and she has a two-year-old sister, so I look after them both."
“I’ve taken seven types of medication since my diagnosis. Some of them have made things worse, and some have made things better, but none of them has solved the problem. At the moment I’m on three drugs.
"The main side effect is having a poor memory. It’s terrible. I remember random and pointless things, but I don’t really remember things such as our wedding day. It feels strange looking at the photos. I know I was there and had a great time, but I can’t remember much, which is very sad.
“Another side effect of the drugs is that I’ve lost weight. I used to be a bit overweight at 15 stone 3 pounds; now I’m 10 stone 8 pounds, which is good, although sometimes I think I’ve lost a bit too much.
“At home, we try to keep things as normal as possible. Avoiding alcohol made no difference to my seizures, so now I can enjoy a glass of wine in the evening. I hope to stay at home until the girls are at school, then I’ll get a local job.
“I would never have considered being a stay-at-home dad if I hadn’t been diagnosed with epilepsy. I have so much fun being with my girls. I've enjoyed seeing them grow up right in front of me. Although I was devastated when I was diagnosed, it's had a positive impact on our lives.”
Since this interview, Mark has had an operation to remove his left temporal lobe, the part of his brain that was involved in his seizures. The operation was a success and he has not had a seizure since. Although he knows this might not be a permanent solution to his condition, Mark hopes that things stay the way they are now.
Find out about epilepsy treatment, including surgery.

It is difficult for me to know how to begin writing this. So many stories about epilepsy are so heart wrenching that I feel a twinge of guilt telling my story. I am knocking on wood with one hand while I type this sentence: I do not have a child with epilepsy. Rather, I am the subject of this story.
I was diagnosed with absence seizures when I was six years old. I remember thinking that I needed glasses because I couldn’t see the blackboard. My older brother had trouble in class before he got his glasses, so this made sense to me. In reality, my sight was perfect—I just didn’t know what was going on because I was having upwards of 100 seizures a day. One day at lunch, my mom gave me a strange look and rushed me to the hospital. Apparently, she had been calling my name repeatedly and I didn’t answer. I remember the CT scan as if it happened yesterday—the doctors disobeyed my mom’s instructions and did the test after she had left to find my brother a babysitter, and invited several student doctors in to watch. You might find it hard to believe, but in my child’s mind, that episode—lying with my head restrained, my body under a lead blanket in a huge machine with so many strangers staring at me—remains the single most traumatic thing that happened to me because of epilepsy.
Don’t get me wrong—things changed. My teachers had to be assured that I could still remain in regular classes (I was having all of those seizures and was essentially unconscious for a big portion of class, and yet still kept up, my parents said), and my friends and their parents had to be told about my condition. I could not play video games, ride roller coasters, look at strobe lights, or watch too much TV. I had to watch my diet and my sleep, wake up in the middle of the night to take medicine and get regular blood tests. I learned how to play chess so my dad could keep me awake before my EEGs. But in general, I had a very normal childhood.
My seizures were well controlled with medication, though I had numerous side effects, including weight gain and intense stomach pain. Those pains eventually sent me to the hospital once again when I was eight. After a week in the hospital undergoing random tests (for cancer, lactose intolerance… everything but epilepsy), my neurologist admitted that I was indeed having a toxic reaction to my medication. When he took me off of the medication, my pain lessened and my seizures declined. The doctor, who specialized in pediatric neurology, did not seem to have any idea what was happening to me, but he decided I was “cured.” Recently, my mom gave me the medical records from that doctor, and they read like a therapist’s notes: She is a happy child, bright, cute. You can definitely sense his surprise.
Two and a half years after my miraculous “cure,” during which I was seizure-free, I had a grand mal seizure in the middle of school. I was in sixth grade, and all of a sudden, I had epilepsy again—and everyone knew it. But perhaps the most miraculous thing about my experience with epilepsy is how little I was ridiculed for it. According to my friends, while I was having the seizure, a popular boy in my class jumped up declaring “my cousin has that” and no one made fun of me. My teacher had been a paramedic in the army and knew what to do. Counselors were sent in so the other kids who thought I was dying could learn about what happened. My mom apologized that she hadn’t been there, and I told her laughingly, “That’s ok, mom; I wasn’t there either.” Later, when I started dating and had to tell boys that I had epilepsy (my parents told me that everyone should know, both for my protection and theirs), none of them balked. “What should I do?” they would ask. “Nothing,” I’d say. “Make sure I don’t hurt myself.” “OK, what time do you have to be home?”
My seizures were well controlled from the ages of 11-17. A few months before I went away to college, I was taken off of the medication as an experiment. It has been 17 years, and I haven’t had any seizures. I also don’t have any idea why I had them, or why they stopped. My one lasting effect of epilepsy—besides a lifelong tendency for seizures—is a very enlarged liver due to those years of taking anticonvulsants, which was discovered by a surgeon when I had my gallbladder removed at 25. Other than that, since age 17, I have earned a masters degree, developed a career doing research on financial services, married, and had two children. My life has been very happy.
And yet I think about the return of epilepsy all the time. “Will pregnancy give me seizures?” I wondered that as soon as I got over the joy of that first positive pregnancy test. My doctors had no idea. I have been happy to have lost weight quickly after having my second child, but I’m secretly worried that rapid weight loss or hormonal changes from breastfeeding might trigger seizures. After all, those causes seem as likely as any. Then what would I do? It’s hard enough juggling a career and two preschool aged kids. I wonder if I’d be able to keep my job staring at a computer screen all day, if I could be alone with my baby, drive, if I could still be independent. I know there are many women and men who do all of these things while battling epilepsy, like my Aunt Becky, but I don’t know if I have it together enough to be one of them.
And of course I wonder about my kids. Will they have epilepsy? Is that something I somehow passed on to them, seeing as we have epilepsy on both sides of my family? No one knows. It seems that in the course of talking about epilepsy, no one has any answers. But I like to think that what we do have is a way to think differently about our bodies and our minds. Seven months after my first miraculous cure from epilepsy, I was hit by a car as I walked home from school. I had massive internal injuries and my pelvis was fractured on both sides in multiple places. It took three months for me to learn to walk again. In that time, I was in a wheelchair, and I received a lot of poor treatment, mostly from adults. You look normal, people would say to me. What’s wrong with you? As if the vision of a “normal-looking” child who nonetheless had a disability or neurological issue was somehow threatening or frightening.
Living with epilepsy and living through that accident remind me of the three bullets I have dodged in my life: the first, when epilepsy did not affect my childhood to any great degree; the second, when I emerged from that car accident alive and not paralyzed; and the third, when my returning epilepsy left me relatively unscathed once again. But therein lies the definition of luck. You are lucky when you experience a positive outcome in direct juxtaposition with those who are not so fortunate. I am lucky that I have had many years wherein I could walk with my own legs, work, go to school, deliver babies, avoid medication, and sleep peacefully. I am well aware that the next bullet might hit me. I am even more aware that it has already hit so many others, including those with epilepsy so severe that it robs them of the type of life I have been lucky to live. I am very grateful that there is an organization like CURE that focuses on the spectrum of seizure disorders with the intention of eradicating the condition so that “luck” is less of an issue. Let’s find a real cure.

Andrew's Story
Sudden Unexpected Death In Epilepsy (SUDEP): No one told us….Nothing prepares one for opening the bedroom door and finding their most beloved treasure gone. Nothing. Our only child’s life essence gone.
Andrew’s story begins in St. Petersburg, Florida, born as “Andrew John Wentz” on August 6, 1986. Andrew had the usual upbringing of two working parents—John an undercover police detective, and me rising the nursing ranks at the local Children’s Hospital. He had the pleasure of spending lots of time with many loving people—grandparents, my sisters Diane and Jennifer, and great baby sitters “Ma and Ba.”  [Andrew] Nothing out of the ordinary… just a kid that did have incredible balance, who we would find climbing and doing a balance beam act on anything he could find!
As Andrew grew and matured he did the usual guy stuff, tee-ball, and soccer. Andrew excelled at soccer, spending summers at the local college soccer camp. He had the privilege of spending some great summers with his grandparents in Pennsylvania; we would pack his bag and off he would go on the airplane. Andrew loved to go out to dinner with us, and enjoyed trips to Germany and France. He attended different schools of all creeds and colors, and at an early age, we could see that he truly was always defending the underdog. He loved animals, and we had dogs, horses, birds, and a cat.
We began to take ski trips to Taos, New Mexico in order to decompress from our work. Andrew became an amazingly proficient skier for a kid raised in Florida. John and I found his ability truly remarkable. He won NASTAR racing medals, and just made truly beautiful tracks in the snow. John would wildly ski the slopes and Andrew would follow behind, I think to be sure that his dad survived in one piece. I loved to ski in Andrew’s tracks because they felt so free and natural.
But one day after a ski trip, Andrew had his first grand mal seizure and was diagnosed with Simple Partial Epilepsy. He was 11. It was idiopathic in nature—no reason, no family history, it just was. We spent many years trying to determine the right drug combination that would allow him to function cognitively and physically. Eventually the drama settled, but not without trauma to Andrew. Seizures in the classroom, seizures on the soccer field, episodes that truly diminished his self-esteem. He did all he could to not let anyone know that he had epilepsy.
Subsequent side effects of the medication began to raise their ugly heads—problems memorizing, remembering, and just an overall decreased zest for life. Through it all Andrew continued to [Andrew] persevere. My role as a mom had a new added dimension of advocating for his rights, sometimes as an “attack dog.”. Lack of understanding in the school system became so stressful that I felt a visual was needed. To make the point, we even had his dad, the “undercover detective,” wear his police uniform to a meeting with school administration, as I slammed two feet of documentation on “epilepsy rights” on the table for effect. Needless to say, they paid attention.
Andrew made it through high school, but with the issues of not being able to drive or socialize on a normal timetable. He always tried to take it in stride and seemed to gravitate to some great friends that he could count on. Finally, he had a period of time where the seizures subsided; he still needed medications, but was finally able to drive at age 19. This was truly a turning point for Andrew that gave him the freedom he so needed after high school.
Community College was the next step, but the grades weren’t coming without great stress and feelings of inadequacy. Through the grace of God, someone mentioned to me Job Corps, and we followed the path that took Andrew to the Wolf Creek Job Corps program. Despite ups and downs, good times, bad times and sometimes feeling that he needed to leave, he stuck it out. We had many talks about his gentle soul, his kindness toward others and how he would make a good Certified Nursing Assistant. He followed this path and it took one year, and two difficult and frustrating tries to get through it. He finally graduated the week of his death.
Andrew came home a mature, grown man in mind, body, and spirit thanks to the amazing work by Job Corps, and the faith our family had in his ability to succeed on his own timetable! He was happy and said to me, “Mom, I just LOVED my clinicals.” He had intentions of returning to Job Corps to continue after his vacation at home. I was able to hug him and get him settled in for what I thought would be a comfortable night. He told me that he was very tired and wanted to sleep in. The following day, August 22, 2009, I was faced with a parent’s greatest fear and pain—having to open the bedroom door….
Andrew will live in our hearts forever. We were asked to give our most treasured gift. I promised Andrew that I would continue to share his essence in my life’s purpose and nursing work. So here it is for the sake of a cure for epilepsy. Unfortunately, there was no cure for our beloved son. We had Andrew for 23 glorious years. He was a quiet, shy, kind, and gentle spirit—like no one I have ever known.
With tender hearts filled with love and hope for a cure.

Rebecca's Story
The other night at dinner, our 10-year-old daughter, Rebecca, had what we think was her 10,000th epileptic seizure. It was a split-second drop seizure, which sucked the air out of her body and sent her head crashing face first into her plate of pasta.
As usual, Rebecca wiped the food off her face and reached out for a hug. After checking for missing teeth, my wife and I hugged her as she fought off the tears and smiled. She's a resilient kid, but she needs more than hugs from her helpless parents. She, like millions of other people with epilepsy needs a cure for this devastating disease, which has compromised her young life despite the best efforts of her doctors, 24 unsuccessful drug trials and a dozen experimental therapies.
Fifty million people worldwide suffer with epilepsy, including 3 million in the United States alone. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Every year, an estimated 50,000 deaths occur nationwide from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP) and other seizure-induced causes such as drowning.
In this era of major medical advancements, surprisingly little is known about why epilepsy occurs in so many adults and children. Two thirds of those diagnosed with epilepsy, including Rebecca, have seizures classified as "idiopathic," which means doctors have no idea why they occur, sometimes as often as 100 times a day. Epilepsy is frequently misdiagnosed, as well, and the subsequent delay in treatment makes successful seizure control even more unlikely.
When we first witnessed Rebecca's seizures as an infant, our pediatrician dismissed her violent body movements and muscle jerks as nothing out of the ordinary and attributed them to her being gaseous from indigestion. Eight months later, a pediatric gastroenterologist told us she didn't have acid reflux; she had epilepsy. We needed to see a neurologist.
While some people with epilepsy are fortunate enough to achieve seizure control or outgrow their seizures, one third do not. Most patients endure serious side effects from drugs and treatments such as surgery. And the impact of uncontrolled seizures and drugs on children like Rebecca often causes lifelong learning deficits and developmental delays, which makes finding the right schooling and appropriate level of care a significant challenge.
As is the case with any serious illness, having a parent or child with epilepsy can undermine the emotional and financial health of families, leading to higher rates of depression, divorce and even bankruptcy. Living without health insurance only exacerbates these challenges.
During our journey with Rebecca, we have been fortunate to meet with some of the most respected neurologists in the nation, as well as senior officials at the National Institutes of Health. Despite their best intentions, it's painfully clear that more research needs to be done on the root causes of epilepsy and the development of safer, more effective treatments. As one prominent West Coast neurologist explained to us in a moment of candor: "There is nothing we can do to help your daughter." That's not the sort of news any parent wants to hear.
The list of successful people who have had epileptic seizures includes Truman Capote, Richard Burton and Neil Young. Historians also believe Vincent Van Gogh, Beethoven, and Isaac Newton exhibited symptoms consistent with epilepsy. And when Supreme Court Chief Justice John Roberts suffered his second documented seizure earlier this summer, many doctors concluded he has epilepsy, which is defined as two or more unprovoked seizures. But most victims continue to suffer in silence, living substandard lives in the shadows of a culture that shows little understanding of their plight. Epilepsy still carries with it an unfortunate stigma and leaves many people hiding the condition from their employers, co-workers and friends.
To add to this burden, Hollywood films and TV shows routinely feature insensitive jokes about epilepsy, as if someone having a seizure is something to laugh about. But I can assure you that having a loved one with epilepsy is no laughing matter.
Until more research leads to a significant medical breakthrough, it will be tough for anyone to live well with epilepsy. In our family's case, we just try to live on in spite of it and hope that someday soon, something will change for the better and Rebecca can enjoy her pasta in peace.

Stories of People Living with Epilepsy

For those of you who have not read this we are reposting this moving speech.

We, at EAWA received this email a few days ago. With the permission of John Fielding we have reproduced the details here for you to read.

"My name is John Fielding and I am writing this e-mail to advise you that I will be forwarding a cheque for the sum of $625.00 to your organisation. This donation is from the Perth-Bayswater Rugby Union Football Club Inc.

My 18 year old daughter Rachel Fielding passed away on the 31st of May this year. She had struggled with Refractory Epilepsy for 5 years which did not respond to medications. Following a seizure she fell in such a way as to block her airway whilst she was unconscious and it unfortunately took her life. As you can imagine there was a huge reaction from her family and friends to our loss and their support has been amazing. Some of Rachel’s friends have subsequently involved themselves in a number of activities to increase awareness of her condition and to raise funds for various Epilepsy organisations.

Rachel had only recently joined a Rugby Team and the news of her passing came as a sudden shock to the whole team. At the recent windup presentation they requested that I present a memorial trophy in memory of Rachel. For your information I have attached a copy of my speech I gave which may give you a little insight into Rachel’s life. At the windup I was presented with a cheque that the girls in Rachel’s team had been instrumental in raising and they requested that I forward it on to your organisation so you may be able to assist others with this unfortunate condition.
Hi, my name is John Fielding and I have been invited here today to present a trophy in memory of my daughter Rachel Fielding. As Rachel was a new member to the club this year and she only played a few games, I am assuming, excluding the ladies team, that most of you do not even know who Rachel is.

So before I make the presentation I think it fitting that I just share with you a bit about Rachel’s life.

And who better to do that than Rachel herself. I will now read an extract written by Rachel when she was writing to someone about her condition.

My name is Rachel Fielding and I have refractory Epilepsy. I had my first seizure when I was 14 and I am now in my second year of Uni about to turn 19. (In that 4 and half year period Rachel had about 100 full on seizures)I would really like it if the people around me knew more about what I was going through rather than appearing scared of me once they find out. I think there is a stigma about epilepsy but that is only because so little is known about it.

• “I am one of the 50 million people around the world that have Epilepsy.
• The two types I have are tonic-clonic (the ones you shake a lot and go unconscious) and absence (When you just phase out for a while), but there are actually around 40 different types of seizures.
• It feels like I have been on at least 20 different medications and then mixes of medication and the side effects really suck. Some make me tired, some depressed, some really hungry and most don’t even work. I even got Kidney Stones from one of them which were very painful
• Only 70% of people get seizure control with medication and the other 30% of us just have to be really careful.
• Obviously it’s not safe to have seizures I have hurt myself many times. My tongue has been a major casualty as it gets in the way of my teeth. Loads of scabbed knees and elbows, numerous black eyes, a broken nose, chipped teeth and some really bad burns.
• I am still learning to live with my seizures but I have not yet mastered it. Turning 18 has added problems to do with trying to be an adult and be independent and go out. It is so hard to live with seizures as there is ALWAYS a part of my life that I am not in control of. I've had to accept that there are some things that I can't do because it’s too dangerous for me and other people, but at the same time I have to make sure I'm not using the epilepsy as an excuse, to not live my life! I just wish that more people understood how complex this is.

Shortly after writing this Rachel came home one day very excited and announced that she had been talking to a friend at Uni, and she had decided she was going to play Rugby, and training was tonight could I give her a lift. (All in one breath) She had obviously decided that Rubgy was one of those things that was not too dangerous)

At first I was anti the idea as not only did Rachel have Epilepsy but she had only recently gone through double knee surgery to stop her knees from dislocating. But I could see the excitement in her eyes. She battered her eyelids to suck me in and before I knew it I was driving down Beaufort street taking her to training.

After that Rugby was all she would talk about. She skipped lectures at uni so she could go to training and timetabled her study time so it did not clash. She started taking her lunch to Uni so she could use the Rugby Lunch box she had been given. Rugby had ignited a passion in her that I had not seen for a long time.

Her first game arrived and there was much excitement in the house. We had to go out and buy new boots and she took great pride in pulling on the uniform for the first time. Rachel said she did not want my wife and I to come and watch until at least she knew some of the rules. We gave her, her space as we realised she was doing something off her own back and we wanted her to find her own way.

However instead of her 1st game being one to remember for all the right reasons unfortunately Rachel had a seizure after the game. She fell from a 1 meter lime stone wall straight on to her face and as a result lost two of her front teeth and smashed up her face quite badly.

On the way out to the Fremantle hospital that night I said to my wife well that might be the end of her Rugby career. After just one game. How wrong I was. A few days later with a head bandaged like a mummy and missing teeth she was determined to go to training and not let her epilepsy dictate her life. I told her that she will scare the living daylights out of her coach and team mates showing up like that but she was determined to go. So once again I found myself driving down Beaufort Street taking her to training. We finally convinced her that she would have to miss at least one game before she returned and she reluctantly agreed.

It wasn’t until after her come back game when I realised how much this sport of Rugby had taken her in. Rachel still did not want us to come and watch. So when I picked her up after the game I asked her how the game went. There was silence for a moment and then she just started crying. After some cajoling she explained to me that they had a full team that week and the coach didn’t put her on not even for 5 minutes. She knew the coach was probably just trying to protect her but she didn’t want sympathy she just wanted to fit in and be part of the team, not some freak sitting on the side line.

Once again I thought well that may be the last straw and this will surely be the end of her Rugby Career. But she was not to be deterred, she showed up for training the next week as if nothing had happened determined to work her way back into the side.

I don’t know what she said to the coach but the next week after the purchase of a helmet she was back playing.

For Rachel the challenge was not to be the best player in the team or to make that unbelievable Tri. For Rachel the struggle was to just make the team, to be part of something where she felt she belonged. I truly believe she found that place right here with this club and for that I thank you all.

I am very honoured to be able to present this trophy tonight in Rachel’s memory. The intent of the trophy is not for the best player, not for the player that scores the most tri’s but for the player that has the courage to keep up the spirit even when the road ahead looks all up hill. While Rachel only played a handful of games for the Club I hope she will be remembered as the person who never stopped climbing that hill, remembered for all the road blocks she had to jump over, remembered for all the sacrifices she had to make just to take the field and finally remembered for the perseverance she showed just to play the game she had come to love.

It is these qualities that the recipient of this trophy has shown this season and it is with great pleasure that I am able to award this trophy

EAWA Note: Please feel free to share this on your Facebook status

Alissa Bowbanks - Epilepsy at 24

When I was a child I would occasionally see my mother write epilepsy under health information for school enrolments and so forth. I remember questioning this at one point, probably when I was about 11 years of age. She informed me that when I was six months old the doctors had found a scar on my brain after my mother noticed I was having the shakes in one of my arms.
The doctors at the time really couldn't tell her much, just saying that there was a possibility that I might develop epilepsy as I got a bit older.
22 years passed with nothing. It was rarely discussed or even considered, until October 2008 when I woke up in the morning and went through to the bathroom to have a shower and get ready for work. The next thing I remember is waking up in bed with a towel wrapped around my head as I normally would do to dry my hair.
I remember feeling drowsy and having a headache, so when I pulled the towel away from my hair I was surprised to find blood all over the towel and dried up in my hair. The shower curtain and rail were on the floor covered in blood, and there were drops of blood in our loungeroom also.
The doctors told me I fainted, and there was nothing to worry about. They gave me a pregnancy test which came back negative, and as I had two children already I was doubtful that pregnancy was the cause. Yet, two weeks later I found out I was in fact pregnant.
I had a hassle free pregnancy although I ended up having an emergency c-section which was a shock after two natural deliveries. Four weeks after having my daughter, I was picking my sons up from their child care centre. I got into the driver's seat and picked up my car keys. That is the last thing I remember. Apparently one of the other mothers found me, and a staff member called an ambulance.
I was semi conscious. I presume as I was reacting to my children's cries. This time, I was foaming at the mouth and breathing very shallowly. Again, the doctors told me I had fainted. I was recovering from a c-section, they said, and sent me home.
It wasn't until January 2010 that I finally got my diagnosis. While in the middle of a job interview, the room spinning began spinning. The next thing I remembered was waking up to two ambulance officers standing in front of me. Fortunately for me, I had witnesses this time and both of them confirmed I was fitting. As you can probably imagine, I didn't get the job.
 I was diagnosed with epilepsy and started on medication February 2010. I have had another three seizures since my diagnosis, one in March, June and July  2010. I am now on Epilem and Keppra, and it seems to be working. I have been seizure-free for over a year.
The doctor's are still puzzled as to why I went so long with no seizures before epilepsy suddenly reared its head up, but I am just glad that I can make informed decisions and inform those around me. Epilepsy is very misunderstood and a lot of people are scared of the idea of it.
I share my story because hearing the stories of other epileptics and how they have dealt with it has been such an encouragement to me.

Water polo champ Luke Quinlivan talks about epilepsy brush with death

GOOD MATES: Australian water polo player, Luke Quinlivan, (centre) who sank to the bottom of the Challenge Stadium pool when he had an epilepsy seizure, with mates Luke O'Halloran and Mitchal Ainsworth, who came to his aid. Picture: Theo Fakos Source: PerthNow

AS water polo champion Luke Quinlivan sank to the bottom of the Challenge Stadium diving pool last November, his teammates watched in amusement, thinking he was mucking around.
His buddies at the early morning training session had no reason to think anything was wrong with the fighting-fit 25-year-old goalkeeper for the national men's team.
But Quinlivan was in the stranglehold of an epileptic seizure, unconscious and seconds away from drowning.
It wasn't until his cousin Nick O'Halloran and best mate Mitchal Ainsworth saw him at the bottom of the 5m pool in a strange "stretching" pose that alarm set in.
The pair quickly swam down to Quinlivan, who had been under water for about 60 seconds, and heaved their 100kg teammate out of the pool.
Quinlivan, the estranged son of former Olympic swimming champion Neil Brooks, described the experience as "scary".

"When I woke up there were people looking over me and a pool attendant pushing an oxygen mask on to my face and people pushing me to sit down," Quinlivan said.

"I didn't know where I was or what was going on, so my natural reaction was to try to fight people off. It felt like I was being attacked."

He was taken to hospital for observation and made a full recovery.
Quinlivan blames the seizure on missing his usual morning dose of medication for epilepsy.
Now he wants to raise awareness and dispel some of the myths and stigma surrounding the condition.
Quinlivan was diagnosed with epilepsy in 2001 at the age of 15.

"I know on a conscious level that I have epilepsy and asthma and no hearing in my left ear, and that I'm short-sighted, but on a subconscious level I don't accept that I have (any problems) and I just get on with it," Quinlivan said.

"That's a good thing in the sense that I've never been afraid . . . but it's also been my downfall because there are moments when I have been lax and forgotten to take my medication.

"This last seizure (in November last year) was a harsh reminder that I can't be complacent."

After a successful elbow operation this week, Quinlivan is hoping to get back into serious training soon for next year's London Olympics Games.
He hopes his story will encourage others with epilepsy to always take appropriate medication and also show people with a treatable form of the condition that they don't have to give up their dreams.
Epilepsy Association of WA executive officer Suresh Rajan said many people who had epilepsy, or who had children with the condition, were embarrassed to speak about it, even to family and friends.
Yet epilepsy was more common than most people thought, with at least 20,000 people affected by the condition in WA.
Mr Rajan encouraged employers to have staff trained to help a person having a seizure.
Quinlivan is calling on people to take part in Purple Day on March 26 by buying a purple ribbon or donating to EAWA. For more information go to epilepsywa.org.au.
ALL YOU NEED TO KNOW ABOUT EPILEPSY
Epilepsy is a disorder of brain function that results in recurring seizures.
One in 20 children will have a seizure during childhood and adolescence.
Epilepsy is increasingly common after the age of 50 years.
There are at least 20,000 people with active epilepsy in WA
A further 1,400 new patients present with a seizure each year.
Some seizures are hardly noticeable and other types render the person unconscious.

HOW TO TREAT A PERSON HAVING A SEIZURE:
Remain with the person and stay calm
Note the length of seizure
Protect them from injury by removing hard objects from surrounding area
Gently roll person on side after the seizure
Communicate with them to confirm they have regained consciousness
Reassure the person
Keep onlookers away
DO NOT:
Restrain the person's movements
Force anything into their mouth
Give them water, pills or food until they are fully alert
RING AN AMBULANCE IF:
Seizure lasts more than 5 minutes
Person is not conscious after 5 minutes
Seizure occurs in water
Person is injured
Person is pregnant or has diabetes
It is their first seizure
You are in doubt

Hello, My name is Sara Gustafson and I am 31 years old. I was diagnosed with partial-complex epilepsy on September 15, 2009, at age 29. At times I think of it as the day my world stopped turning but MOST often I think of it as a new challenge or rock that I just need to push out of the way. I grew up just outside of Baltimore with my mom and 4 brothers and sisters. I was the headstrong, hyper child who could not be contained, so my mom begged the local church and rec councils to allow me to participate in softball during the summer before I turned 5, and soccer in the fall, as soon as the softball was underway. She just couldnt handle all 5 kids at once!!! Let me tell you all, after that first day of soccer, I fell in love and that was it. I marched upstairs, rooted through my closet and found my softball glove and hat, and immediately handed them to my mom. I said to her “I don’t want to play this ever again, I love soccer” and so my story began. From that day on, I played soccer every single day, it became my passion; my go to when things were not so great, and when they were amazing too. When I was about 14 I was playing in a soccer tournament in Raleigh, NC in December when I jumped for a ball and collided with another player. I don’t remember what happened after that but my mom tells me that I was hit from behind and proceeded to hit my head on the ground and was knocked out. I clearly have no recollection of the event what-so-ever. I do vaguely remember wandering around the hotel 3 days later and being very confused though!!!. Fast forward another year and a half and it happenend again! A teenage brain, with two major concussions (brain injuries), not to mention all of the times I actually headed the ball or got hit in the head by elbows or other peoples heads in between the two injuries. After the two big head injuries I was in the clear for the rest of my high school playing days until college. I had the amazing opportunity to live out every kids dream and go to the University of Maryland on an athletic scholarship for soccer. While I was there I was hit in the head numerous times (at least 5) but none were anywhere near as severe as the previous two. When you play at that level, and you head a ball the wrong way, you can literally feel your brain swell inside of your skull, but you don’t want to come off of the field. It is one of the worst pains you can imagine. Knowing what I know now, I would have stepped off in a second! The thought processess that go through an athlete’s mind when they are on the field are much different then anyone who is not in that position. You don’t want to give up your spot. You want to keep fighting and you want to keep playing because it’s the one thing you love more than anything else; and because it’s the one thing you have worked so hard for, for so long. Pain is temporary, pride is forever….right? That is what really goes through our heads during the time. I know it may sound absolutely absurd to the outside world, but to elite athletes, its what we work for all the time. We play because we love the game so much. We can’t just walk away. No matter what. I had no clue that the injuries to my head would lead to the epilepsy. After college, I actually played semi-professional for the Northern Virginia Majestics, and was hit just one more time, my last time.
The funny thing is, when I sustained my final concussion, I had already begun having absence seizures but I didn’t know what they were yet and had not been diagnosed. I called them my ff’s or funny feelings. I was originally diagnosed with vasovagal syncope (a heart condition) but the cardiologist could never get me to faint. For some reason both my mother and I knew that this wasn’t the right diagnosis. Then, in May of 2009, on a Sunday afternoon, I was taking a nap on the couch, and somehow woke up on the floor. This may not have seemed to out of the ordinary except that I had wet myself, and was unusually tired when I came to, to the point that I got up and laid back on the couch for about 7 more hours. Then I called my mom to tell her. (She is a Traumatic Brain Injury Nurse). Her reaction was….”that sounds like a seizure” and I just brushed it off!!! I couldn’t have had a seizure. Not me! Fast forward to August and our family vacation on Topsail Island, NC. We had been drinking the night before, and I had gotten up to run the next morning in the heat. My day then consisted of a little sand soccer, followed by fun in the sun all day long. By the end of the evening I felt awful. I remember being dizzy and confused and having never felt like that before. So instead of hanging with the family, I went back to our place and slept. I woke up face first in a huge puddle of blood, with a broken nose and two bottom teeth dangling by the roots out of my mouth. I shoved the teeth back in (which is apparantly what you are supposed to by, I have learned) and proceeded to lay right back down and go to sleep because I was so tired and out of it. My older sister, who is a nurse as well, was two rooms down but I didn’t wake her up. I just went back to sleep. Needless to say when she got up and saw the blood she was a little scared.
So began my story with Epilepsy. I came home from Topsail and found a neurologist who immediately ran massive amounts of tests. His first question after the tests came back was, “did you play contact sports?” Currently I am on my third medication because the first two really affected my moods. Lamictal made me feel crazy and even suicidal (I was in the less than 1%) and Keppra made me very angry and caused me to not sleep. So topomax it is, and it has been working. I have been seizure or “FF” free for over a year now, and my doctor says I can play soccer “recreationally” again…as long as I don’t get hit in the head and I make sure the people around me know of my condition so they dont hit me either. It has worked out well for me, because it was really hurting me to not be able to do it.
I would like to try to increase the efforts in research for post traumatic concussive syndrome and post traumatic epilepsy, specifically in soldiers and in athletes. It’s happening more often than we think!!! I hope my story hasn’t bored you all and I hope to hear more of yours too!! GO TERPS! XOXO SARA