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We Will Rise Above Seizures

Epilepsy is characterizedby having two or moreunprovoked seizures,

and is also known as aseizure disorder. In theU.S., epilepsy has an equivalent prevalence rateto breast cancer (just under3 million people). enwhy don’t we hear moreabout it? One word:Stigma.

Seventeen states had lawspreventing people withepilepsy to marry, and thelast state to repeal these lawswas in 1980! Until June of1999, a state residence originally called the “StateSchool and Hospital forMentally Deficient andEpileptics” operated inCambridge, MN. And according to a 2012 WorldHealth Organization report,

epilepsy is currently used as justification to deny marriage in India andChina.

is is all within the lastsixty years! e next 60years will be different; wewill rise above seizures.

2014 marks the EpilepsyFoundation of Minnesota’s

(EFMN)60th yearof helpingpeople withseizures realizetheir fullpotential.What canwe do toraise publicawarenessand reducestigma in

the next 60 years? We’ve come a long way

recently, with a courageousBig Ten college footballcoach and his family willingto stand up to stigma. Ignorant comments in the media sparked a movement across the country, propelling thou-

sands of people affected byepilepsy to say “no” tostigma.

e next 60 years will bedifferent; we will rise aboveseizures.

e unpredictability ofseizures presents challengesin daily life. Can you imagine your first day ofschool, unsure if you willhave a seizure? Or hoping aseizure doesn’t occur duringa job interview? EFMNsupports marathon runners,educators, CEOs of Fortune500 companies and peoplefrom all walks of life whodeal with this unknownevery day. ese people define courage!

e 60,000 people in ourcommunity with epilepsydeserve a life free fromclassroom bullying,

employment discriminationand being told dreamsaren’t possible. It’s time for everyone affected byseizures to raise our handsand show that we refuse tobe defined by seizures.

EFMN helps people withepilepsy realize their full potential by providing educational resources andconnection to others facingsimilar challenges. Ourprograms and services areFREE and served over127,843 people last year inour community. We areworking diligently to expand the number of people we serve in our 60th year and beyond.

e next 60 years will bedifferent; we will rise aboveseizures.

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Vicki Kopplin, Executive Director

Josh of 93X Rises Above SeizuresI

n the fall of 2013 when themedia was buzzing aboutUniversity of Minnesota

Head Football Coach JerryKill’s seizure on the field,Josh Bitney talked about hisown epilepsy on his 93Xmorning radio show.

Excited phone calls andemails poured into EFMNfrom people saying, “Josh istalking about epilepsy onthe air – someone is talkingabout epilepsy!”

Fast forward six monthsand Josh is in a Dinkytowncoffee shop with EFMNstaff, sharing his story, com-pletely unaware that he in-spired so many people.

Josh’s StoryMany Minnesotans can

thank a Highway Helper fora road rescue. I credit onefor being first to identify arepeatedly misdiagnosedneurological disorder.at’s how my epilepsystory began. And a seem-ingly oand on-air remark

late last year is what bringsmy epilepsy story here.

In contrast to the natureof my job, and despite mypleasing aesthetics, I’m notcomfortable with attention.I also don’t enjoy coffee. Yetaer mentioning on 93Xthat I have epilepsy, I re-cently found myself at a caféwith EFMN staff, drinkingcoffee, embarrassed by be-coming the focus of atten-tion. Go figure.

I’ve had seizures mywhole life. As a kid theywere misdiagnosed dozensof times, erroneously attrib-uted to other things. It was-n’t until I became an adultthat I was appropriately di-agnosed. And like a radiopersonality achieving popu-larity in high school, the cir-cumstances that finally ledto my epilepsy diagnosiswere unusual, and uncom-mon.

At 23, I crashed in heavy394 traffic. e HighwayHelper who stopped to as-

sist suspected epilepsy,which at first seemed far-fetched. However aer twoweeks of follow-up tests, histheory was confirmed.erefore, where physi-cians, ER doctors and othershad failed - a yellow-vestedHighway Helper proved abetter diagnostician thanthe handful of white-coatedPhD’s that came before him.

Fortunately my seizuresare now controlled effec-tively with medications. Ittook three attempts to findone that worked best andabout the same for a neurol-ogist. I’ve now been seizure-free since 2007 – also thelast year I had a full head ofhair and abdominal defini-tion.

Side effects of neurologi-cal drugs can be powerfuland unnerving. Althoughnot the potent, stimulatingtypes of side effects thatsometimes inspire chart-topping rock albums.Rather, a crushing sensation

of eternal exhaus-tion and perpet-ual slow motion. Iwork in a careerthat puts value onthinking quick onyour feet, so find-ing a suitablemedication wasfundamental. Istill feel foggy anda little drugged attimes, however Irealize that’s sta-tus quo for being med-icated. Furthermore, Iblame an early schedule,three kids, and perhapsmost notably - radio stationmanagement.

I’m very pleased with themeds I’m on, and the abun-dance of great neurologistsI’ve met. Of course I wish Ididn’t need to be on it, butI’m aware some withepilepsy take much longerto get seizures managed,and even some require sur-gery. So I’m fortunate.ose are the people who

justly deserve the attention.As do the families andplaces of work that showthem support and care.

In addition to friends andrelatives I find support frommy employer, my morningshow partners Nick and Ali,and the brotherhood of 93Xlisteners. Many of which aremindful I have epilepsy, yetrefuse to define me by it.For that I’m genuinelygrateful. Likewise, I feelprivileged to be asked byEFMN to be a part of what Ihave come to know as animportant and worthy or-ganization.

I’m able to live a normal,albeit mostly boring lifewith epilepsy. Sure, epilepsyis not to be ignored, and canprovide certain challenges –but my story demonstratesthat it’s in no way a (morn-ing) showstopper.

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Advertising Feature

Camp Oz 2014 marks the Foundation’s 31st year of Camp Oz, a traditional camping

experience for kids with epilepsy, with the safety of 24/7 medical staff. 100+campers experience a week of exciting adventures that may not be possible(given medical needs) at other summer camps.

Youth ages 9-17 enjoy swimming, horseback riding, cras and more for aweek at YMCA’s Camp St. Croix. Minnesota Epilepsy Group’s Dr. Frost hasbeen the Camp Oz medical director for 20+ years – thank you Dr. Frost!

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Questions & Answers fromQ: What is Epilepsy?

(Gerald Dove, M.D.)A: Epilepsy is used to describe a condition inwhich a person has a tendency for recurrentseizures. A seizure is whathappens when the brain hasabnormal uncontrolled electrical activity. Having aseizure does not necessarilyimply epilepsy. is is dueto the fact that someseizures can occur due toprovoking factors (e.g.seizures that occur due toalcohol withdrawal and hypoglycemia). In these instances, when these situations or provoking situations are avoided,seizures never occur orrecur. On the other hand,someone with epilepsy canhave seizures, even when

these situations are avoided.ere are many causes ofEpilepsy, some inherited orgenetic and others acquired,such as brain trauma, braintumors, strokes or brain infections.

Q: When should someoneseek a specialist for epilepsy?(Tacjana Friday, M.D.)A: An epileptologist is aneurologist who specializesin the treatment of seizuresand epilepsy, and has acquired expertise inseizures and seizure disorders, anticonvulsantsand advanced treatment options such as epilepsy surgery. An epileptologist is mainly consulted when a patient has poorly controlled epilepsy requiring more complex

medical management, requires further evaluationwith an EEG (electroen-cephalogram) to help characterize their spells orseizures and/or to discussother treatment options.

Q: Will I be on anti-epilepticmedication for the rest of mylife? (Syed Shahkhan, M.D.)A: Most people with well-controlled seizures wouldlike to stop taking theirseizure medicines. In somecases, this can be done withthe supervision of your doctor. You have the bestchance of remainingseizure-free without medication if: • You had few seizures before you started takingseizure medicine• Your seizures were easily

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controlled with one type ofmedicine • You have normal results ona neurological examination • You have a normal EEG

Most doctors will con-sider tapering the dosageand discontinuing yourseizure medicines aer aseizure-free period of 2 to 4years. A decision aboutwhether to stop takingseizure medicines shouldonly be made aer a longconversation with your neurologist, weighing all therisks.

Q: Seniors will be the largestpopulation with seizures inthe next five years. What special concerns might a senior need to know aboutepilepsy?(Rupert Exconde, M.D.)

A: Epilepsy frequently af-fects seniors. Relative toyounger populations, theover-65 age group has ahigher prevalence ofepilepsy.

e clinical presentationof epilepsy in the seniorsmay be quite different fromwhat is typically seen inyounger people. In addition,common illnesses of olderpeople can be easily mistaken for epilepticseizures, and vice versa.Seniors are more likely topresent with nonspecificsymptoms, such as alteredmental status, memorylapses, episodes of confusion and loss of consciousness. Because ofthe atypical presentation,the diagnosis is usually delayed by several months

even in the care of an experienced neurologist.

Q: What is SUDEP?(Rupert Exconde, M.D.)A: SUDEP (sudden unexpected death inepilepsy) is the leadingcause of epilepsy-relateddeaths. It accounts for closeto 20% of deaths in individuals who suffer fromepilepsy. It is diagnosed ifdeath occurred while thepatient is in a reasonablestate of health, death happened during normaland benign circumstances,death was not the direct result of a seizure or statusepilepticus (prolongedseizure) and an obviousmedical cause of deathcould not be determined at autopsy.

Known risk factors forSUDEP include: young age(25 to 35), male gender, developmental delay, use of alcohol and recreationaldrugs, uncontrolled generalized convulsiveseizures, night time seizures,concurrent use of multipleanti-seizure medications,subtherapeutic anti-convulsant levels, and treatment other than medication (surgery, vagus

nerve stimulator, ketogenicdiet).

e goal for decreasingthe risk for SUDEP is optimal seizure management. Adherencewith medication intake is essential. Avoidance of alcohol, illicit drugs,seizure-provoking situations, and high-risk situations (e.g. driving,swimming) are of paramount importance.

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Epilepsy Experts

Rise Above Seizures Balloon LaunchMay 15@2pm

For our 60th anniversary,we'll be releasing 60,000balloons in recognition

of the 60,000 people in ourcommunity with epilepsy.

On ursday, May 15 at2pm, individuals and organ-

izations across MN and NDwill be taking part in ourballoon launch event. isis an eco-friendly event – weconsulted with both the MNPollution Control Agencyand the MN Department of

Natural Resources.To get your FREE

balloon, go to RiseAbove-Seizures.com. And pleaseuse #RiseAboveSeizures insharing your photos andvideos of the event. Stroll for Epilepsy on

August 7, 2014 Join us for the largest/awareness event to benefit peo-

ple with epilepsy in MN and ND! is family-friendlywalk is available in five locations: Twin Cities Metro,Duluth, Fargo/Moorhead, Rochester and St. Cloud.

Teams gather to support loved ones with epilepsy,and the connections to others with seizures are price-less. Over 3,400 people Strolled with us on 2014 and weexpect even larger crowds in our 60th anniversary year.

Convenient online registration opens on April 15 atefmn.org.

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anks toSavers Storesfor hostingballoon filling stations!

The Latest in Epilepsy Research

Epilepsy research is critical to finding a cureand stopping seizures.

New therapies emerge each year, ranging fromdeep brain stimulation to extended-release medications. Yet epilepsy,which has higher prevalencerates than other conditions,is woefully under-funded.

Here are some highlightsfrom CURE’s 2013 “State ofResearch in the Epilepsies”report to shed light on thecurrent state of epilepsy research:

• Per patient funding ofepilepsy research continuesto be inadequate to createlong-overdue breakthroughs.

• Basic and clinicalepilepsy research is still primarily focused on seizure

control, rather than preventing or stopping theprogression of the disease.

• We know now that thevast majority of fundinggoes to incremental improvements in anti-convulsant medications(which are largely ineffective for about 40% ofpatients) rather than to uncovering underlyingmechanisms that may leadto cures.

Did you know Minnesotais an important home toepilepsy research? e University of Minnesota,Minnesota Epilepsy Group,Mayo Clinic and others arepaving the way with newstudies and dedicated staffstudying epilepsy. Checkout these upcoming epilepsy

research events in Minnesota:

• e international Partners Against Mortalityin Epilepsy (PAME)

conference is in MinneapolisJune 19-22 at the Hyatt Regency. e goal of thisthree-day learning event isto prevent mortality in

epilepsy through a rigorous scientific meeting of researchers, clinicians andpeople affected by epilepsy

• e Epilepsy Founda-tion of Minnesota will hostits second epilepsy researchsummit on Saturday, No-vember 22 at the BakkenMuseum in Minneapolis.Leading clinicians and re-searchers from Minnesotawill share current epilepsyresearch and connect withothers in the field.“In this country alone,

one in 26 people will develop epilepsy in theirlifetime. For their sake, wemust continue to be vocaladvocates for makingepilepsy research a nationalpriority.” -Susan Axelrod,Founder of CURE Epilepsy.

Epilepsy Facts • Epilepsy affects more Americans than multiple

sclerosis, cerebral palsy, muscular dystrophy andParkinson’s disease COMBINED.

• 1 in 10 people will have a seizure in their lifetime, and 1 in 26 people will develop epilepsy. In 70% of cases the cause is unknown.

• In the U.S., epilepsy has an equivalent prevalence rate to breast cancer (just under 3 million people). Worldwide, epilepsy affects50,000,000 people.

• More than 60,000 people in our communityhave epilepsy – enough people to overflow TCFBank Stadium.

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FREE Trainings to Make Your Workplace, School or Church “Seizure Smart!”

Because 1 in 10 people will have a seizure in their lifetime, knowingseizure first aid is important. Our community can support people with seizures by knowing how to help.

EFMN’s Seizure Recognition & Response Training is a FREE community resource that teaches seizure first aid.

Visit efmn.org to request a FREE training and get “seizure smart.”

EFMN By the Numbers EFMN leads the fight to stop seizures, find a cure

and overcome the challenges created by epilepsy. Our nationally-recognized programs and services educate, connect and empower people affected by epilepsy.

• In 2013, we served 127,843 people in the community.• We trained 9,890 people with Seizure Recognition &

Response training in the last year.• In any given year, over 4,000 people use our

Information & Referral and advocacy programming.• 300+ youth across MN and ND are “Shining Stars,”

kids with epilepsy who connect with others facing similarchallenges

• People are involved! In 2013, over 750 volunteers donated 4,179 hours of time to EFMN.

• EFMN.ORG hosts a number of FREE resources and the latest information about epilepsy.

e Foundation collects used clothingand home items, with convenient curbside pickup available online atefmn.org. 100% of the proceeds fromyour donated items support free programs and services for people withepilepsy. See what a difference yourdonations make:• 300 bags sends a child with epilepsyto Camp Oz• 135 bags educates a child’s classroomabout epilepsy• 20 bags allows an adult to attend anepilepsy education conference

8Your Used Clothing SendsKids to Camp Oz!

Visit efmn.org or call 651.287.2300, ex. 3 today to put your used items to work for people with seizures!