Newsletter - Winter 2014

Clinician’s Corner: SUDEP

Seizures Don’t Stop Me

Save the Date in 2014

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We serve over 100,000 people annually, and 2014 marks our 60th anniversary

of helping people with seizures!

A qUArtErly PUbliCAtion of thE EPilEPSy foUnDAtion of MinnESotA WintEr 2014

WWW.EfMn.org

M i n n E S o t A

2 | Epilepsy Minnesota www.efmn.org

The epilepsy FoundaTion oF MinnesoTa is a nonprofit organization and one of forty-eight affiliates of the National Epilepsy Foundation. Serving Minnesota and Eastern North Dakota, the Foundation works to educate, connect and empower people affected by seizures.

1600 University Avenue West | Suite 300 | St. Paul, MN 55104www.efmn.org | 800.779.0777

Mission The Epilepsy Foundation of Minnesota leads the fight to stop seizures, find a cure and overcome the challenges of living with epilepsy.

oFFicersPresident Brett BoyumPast President Ann S. Kelly JonesVice President Tim GallagherTreasurer Elizabeth BeastromSecretary Kari Scanlon

Appointed MeMbers

designAted MeMbers

Tess Sierzant – PAB ChairMark Lenhardt –Central MN RepresentativeJosh Malnourie – Northwestern MN & Eastern ND Representative

proFessional advisory BoardChair | Tess Sierzant, MS, RN, ACNS-BC, CNRN | Saint Joseph’s HospitalAnne Barnwell, MS, CRC | Epilepsy Advocacy & Employment GroupJeannine Conway, PharmD, BCPS | University of MinnesotaArmantina Espinosa, MD | Minneapolis Clinic of NeurologyTimothy Feyma, MD | Gillette Children's Specialty HealthcareMiguel Fiol, MD | University of MinnesotaDouglas Heck, PhD | Duluth Psychological Clinic, IncThomas Henry, MD | University of MinnesotaIlo Leppik, MD | University of Minnesota & MINCEP Epilepsy CareDonna McKenny, PHN, LSN, MEd | Centennial SchoolsKatherine Nickles, MD | Mayo ClinicPatricia Penovich, MD | Minnesota Epilepsy GroupKathleen Rieke, MD | CentraCare Health SystemFrank Ritter, MD | Minnesota Epilepsy GroupJoanne Rogin, MD | Midwest Center for Seizure Disorders Elson So, MD | Division of Epilepsy, Mayo ClinicTeresa Tran, MD | Park Nicollet

2014 marks our 60th year of helping people with seizures realize their full potential by providing programs and services that educate, connect and empower.

People with seizures turn to EfMn for educational information, support and connection to others facing similar challenges. Seizures should not stop a child from fulfilling a dream to attend summer camp, or prevent an adult from achieving gainful employment. We are here to help!

Join us in 2014 as we continue the momentum we’ve built to increase public awareness and reduce the stigma around epilepsy. Save the date on page seven for key awareness events!

your feedback is always welcome: [email protected] or 651.287.2314.

Vicki KopplinExecutive Director

“We serve over

100,000 people

annually, and

2014 marks our

60th anniversary

of helping people

with seizures!”

Mike Britten Jason Engkjer – Legal CounselTabitha Fields Marcus Fischer Brandon MegalDeb MeyerMike MurrayWendy Osterberg

Jim SilburnTom SpiczkaJessica Stoltenberg Trudi TryslaChristopher Turoski Randy UnzickerBill Walsh

www.efmn.org Epilepsy Minnesota | 3

Clinicians Corner How Common is the Nightmare? Sudden Unexplained Death in EpilepsyBy Professional Advisory Board Member Katherine Nickels, MD

When the diagnosis of epilepsy is given, there are many

questions that are asked. "how long is medication going

to be needed?" "Will the seizures go away?" "how will this

affect work, school, or family life?" however, there is one

question that is often thought, but not always discussed,

“can a person die from epilepsy?"

overall, people with epilepsy are expected to get an

education, work, have families and pursue other goals just

like those without epilepsy. We do need to be aware that

seizures can cause injuries such as cuts, bruises and broken

bones. Seizures in a pool or bathtub can cause accidental

drowning. Seizures while driving can lead to car accidents.

fortunately, severe injury due to a seizure is uncommon and

some can be prevented. for example, people with epilepsy

are cautioned to never swim alone and to shower rather than

bathe.

We also need to be aware that people with epilepsy are at

increased risk for premature death. how big is this risk? in

adults and children the mortality rate is 2-3.5 times that of

the general population1. Why does this happen?

Continued on page 4


Most often, the cause of death is not directly related to

seizures. in the majority of children, it’s the underlying

neurologic disease that leads to early death. in fact, the

mortality rate in children with normal learning and a normal

neurologic exam is essentially the same as the general

population2. in adults, the most common causes of death

are the same as the general population - cancer, heart

disease, stroke3. Unfortunately, seizure related deaths can

also happen due to prolonged seizures (status epilepticus),

seizure-related accidents (such as drowning) and SUDEP.

What is sUdep?

Sudden unexplained death in epilepsy (SUDEP) is the

sudden death of a person with epilepsy without any clear

cause. the death is not due to a seizure-related accident or

a prolonged life-threatening seizure (status epilepticus). We

do not know why SUDEP occurs. often, there is evidence

of a seizure, but the seizure is no more severe than previous

seizures. there are multiple theories being investigated, such

as a possible heart rhythm disturbance, stopping breathing

(apnea) or brain stem dysfunction.

How often does sUdep occur and

who is at greatest risk?

SUDEP occurs in approximately one in 1,000 people with

epilepsy per year. there are no definite ways to predict who

is at highest risk for SUDEP, but those with more frequent

and poorly controlled seizures, especially generalized tonic-

clonic (grand mal) seizures do appear to be at greater risk.

other potential risk factors include not taking medications

as prescribed, young adult (age 20-40 years) age, longer

epilepsy duration and intellectual disability.4 overall, SUDEP is

the cause of death in up to 17% of people with epilepsy of all

age, but the risk of SUDEP in children is very low.

How can sUdep be prevented?

Even if all of these potential risks are avoided, SUDEP can still

happen. it is important for care givers to understand that the

epilepsy related death could not have been prevented. this

point cannot be over emphasized to families and friends of

victims of SUDEP.

What can i do to decrease sUdep risk?

it is most important to have good control over seizures by

having excellent medication compliance. if seizures are

not well controlled, work with your physician to ensure

all available therapy options have been discussed. Avoid

seizure triggers like sleep deprivation and excessive alcohol

consumption. Discuss SUDEP risks with your physician.

Make sure those around you know what to do if you have a

seizure. Shower rather than bathe and never swim alone.

Currently, there are several devices on the market that aim

to improve safety for people with epilepsy. these include

seizure detection devices, anti-suffocation pillows, and

monitoring for seizures at night. however, none are fDA

approved medical devices and none have been shown

to reduce the risk of SUDEP. More scientific evidence is

needed.

Where can i get more information?

• SUDEPInstitutewww.efa.org

• MakingSenseofSUDEP

www.makingsenseofsudep.org

• NorthAmericanSUDEPRegistry

www.sudep-registry.org

• PartnersAgainstMortalityinEpilepsy

www.aesnet.org/pame/

• SUDEPAwarewww.sudepaware.org

references1 A. berg, K. nickels, E. Wirrell, E, et al. “Mortality risks in new-onset Childhood

Epilepsy.” Pediatrics. 2013;132:124-131.

2 K. nickels, b. grossardt, E. Wirrell. “Epilepsy-related mortality is low in children: A 30 year population-based study in olmsted County, Mn.” Epilepsia. 53(12)2164-2171, 2012.

3 D. ficker, E. So, W. Shen, et al. “Population-based study of the incidence of sudden unexplained death in epilepsy.” neurology. 1998;51:1270-1274.

4 t. Walczak, i. leppik, M. D’Amelio, et al. “incidence and risk factors in sudden unexplained death in epilepsy.” neurology. 2001; 56:519-525.

How Common is the Nightmare? Sudden Unexplained Death in Epilepsy(Continued from page 3)


the foundation’s largest youth program celebrates kids with epilepsy, connecting them with others to reduce isolation. Join the 300+ Shining Stars across Mn and nD for frEE (ages 18 and under) online at efmn.org or call 800.779.0777, ext. 2310 for assistance.

i opened my eyes and was

surrounded by people in white

lab coats, a breathing mask

around my nose and mouth.

i was so confused, i had so

many questions. i kept hearing

the word seizure. i thought.

Why did i have one? Will i be

okay? Will i have more? little

did i know this day was only

the beginning of my battle with

epilepsy.

i was eleven years old when i was diagnosed with epilepsy

and i had no idea what it was. i remember going to Mayo in

rochester, Mn for blood work and testing on a regular basis.

i had numerous electroencephalograms (EEg’s) done. An

EEg is a noninvasive test that observes the electrical signals

happening in the brain, it detects seizures, and they (EEg’s)

scared me. i did not like getting those things attached to

my head, it was uncomfortable. i had to sleep with those

electrodes on, then i was woken up about after an hour

and i had to look at a bright flashing light. i didn’t like that

either. After several EEg’s and multiple blood samples, i was

diagnosed with epilepsy and had to start taking medication.

once i started school, my teachers and peers were made

aware that i had epilepsy. i was different and i felt ashamed;

so i stopped taking my medication. little did i know that

was a bad idea... after being seizure-free for awhile, i had a

grand mal seizure during a marching band competition. After

that, i was having seizures more often, and i could not tell

when i was going to have one. i remember having a seizure

when i went swimming once, at my own birthday party, with

my boyfriend, and multiple seizures at home. because of

my decision to stop my medication, without telling anyone, i

had the consequence of having more seizures, more testing

and more medication (not too mention my parents and family

being upset with me). i started feeling bad for myself and

i wanted people to pity me. i was ashamed of having this

disease and i didn’t like to talk about it. “i’ll always have this

disease no – one can help me and no one understands”.

i continued to live with that attitude, until i realized one day

that feeling bad for myself was not going to cure my epilepsy.

Wanting sympathy would not get me anywhere either. the

only person that could prevent the seizures was me, so that

is exactly what i did. i started taking my medication daily.

if i had a seizure i would just get back up and start again. i

decided to take control. i am now twenty three years old, a

homeowner, married and have had from epilepsy for twelve

years. i’m no longer ashamed, instead i like to focus on what

i can do to help others. My mom once told me, when i was

first diagnosed, that god wouldn’t have given me epilepsy

if i was not strong enough to control it. that is what i have

to remember. Do not let epilepsy bring you down...

something important that I realized was that epilepsy

does not have a hold on me; I have a hold on it.

Seizures Don't Stop MeBy Torri Broich


EFMN in ActionProudly serving people across MN and ND

Cargill Cares Community Hero Award

the Cargill Cares Community hero Award was presented to board member Chris turoski and volunteer bill Atwell for their tireless efforts to raise epilepsy awareness.

Midwest seizure Fall Conference

the Midwest Seizure fall Conference drew nearly 250 people and provided epilepsy resources to attendees.

go-pher epilepsy Awareness game

50,000 rally towels were distributed at the 10/26 go-Pher Epilepsy Awareness game!

over 500 people joined us on September 21 to show our support for Coach Kill and the 60,000 people in our community with epilepsy.

Team of Volunteers on Behalf of Epilepsy Foundation of MN

Minneapolis, MN

to recognize the volunteer efforts of all who serve their communities tirelessly

September 2013


January 1, 2014: EfMn is moving to an organization

page on facebook to better serve you. Please

"like" the new organization page at facebook.com/

epilepsyfoundationofminnesota to receive our updates.

February 1, 2014: Camp oz registration opens at

efmn.org.

March 4, 2014: Join us in the Mn State Capitol rotunda as

we advocate for people affected by seizures and educate

our representatives about how to support people with

epilepsy. Contact [email protected] to register.

April 1, 2014: Due date for applications to the Elam baer

and Janis Clay Educational Scholarship program. ten,

$1000 scholarships will be awarded to students who have

shown courage in dealing with epilepsy. Application form is

available by contacting [email protected].

April 12, 2014: Annual “light Up the night” gala featuring

America’s got talent finalist Connor Doran, a talented

indoor kite flyer with epilepsy. tickets on sale february 1 at

efmn.org.

August 7, 2014: Annual Stroll for Epilepsy. registration will

open in late spring.

• Children's Hospitals and Clinics of Minnesota recently unveiled a new Neuroscience Unit for Epilepsy and neurosurgery Patients, featuring: 26 private rooms, a play area where children can be monitored with vEEg technology and more. read more at childrensmn.org.

• The Mayo Clinic revealed the new NeuroPace RNS implantable device to reduce the frequency/severity of seizures in people over 18 years of age with partial onset seizures. former EfMn Winning Kid hannah Meunier’s family was interviewed on fox 9 about the new device.

• The FDA is warning the public that the anti-seizure drug Onfi (clobazam) can cause rare but serious skin reactions. Patients taking onfi should seek immediate medical treatment if they develop a rash, blistering or peeling of the skin, sores in the mouth or hives. full details available at

epilepsy.com.

in 1988, David Wasson made the decision to impact

the lives of people with epilepsy in Minnesota and made

a legacy gift to EfMn through his estate. twenty-four

years later on December 25, 2012, David passed away,

but his legacy continues through his generosity.

David built his home in Chanhassen in 1991 and was an ever-present

fixture in his community, becoming close with his neighbors (who

supported David when he had seizures). David was an eternal student,

and here is an example of how his love of learning and his generosity

combined to change a life:

• Thisfall,awomanwhowashavingdifficultiespassingherGEDtest

contacted EfMn’s information & referral service, which helped her

get an accommodation for extra time to retake the test. She recently

passed her gED test!

eFMn is grateful for the generosity and legacy of david Wasson,

and to ALL of our 2013 individual, corporate and foundation donors.

Your generosity brings us closer to a world where people with

seizures realize their full potential. to learn about planned giving

or ways to support programs & services, contact Hannah baines at

651.287.2319 or [email protected].

Save the Date in 2014

Epilepsy in the News

Giving Back

1600 University Avenue West, Suite 300Saint Paul, MN 55104www.efmn.org

Nonprofit Org.U.S. Postage

PAIDTwin Cities MN

Permit No. 32600

speCiAL 60th AnniVersArY oFFer! Schedule a pick up at efmn.org by February 15, 2014 & receive a $5 Caribou gift card

Enter promo code “EfMn60” to receive your gift card. the foundation collects used clothing and home items, with 100% of the proceeds supporting our programs/services. schedule a convenient pick up at www.efmn.org or call 651.287.2300, ext. 3 today!

one gift card per household; minimum two bags of donated items.

Connect with us!Sign up for an email version of this newsletter and to receive the latest news and information from the Epilepsy foundation of Minnesota. Visit www.efmn.org today to connect with us via email.

Events CalendarTwin Cities Area

RSVP :800.779.0777, ext. 2310 [email protected]

ADULT BOWLINGSaturday, February 152-4 PM The Park Tavern3401 Louisiana Ave. S. in St. Louis Park

Join us for an afternoon of bowling and fun! Pizza and beverages will be provided. Free to people with epilepsy; $5/person. RSVP required by February 12.

EAST METRO ADULT CONNECTMeets the 1st Thursday of each monthJanuary 2, February 6, March 66:30-8 PMEFMN Office1600 University Ave. W., Suite 300 in St. Paul(16, 21, 50 & 84 bus lines)

Connect with other adults affected by seizures in St. Paul, or join us from the comfort of your own home via conference call. January special guest music therapist; March 6 guests from NAMI. RSVP encouraged.

WEST METRO ADULT CONNECTMeets the 2nd Thursday of each monthJanuary 9, February 13, March 136:30-8 PMSouthdale Library7001 York Avenue South in Edina

Join us in the small conference room to connect with other adults affected by seizures. January and February guest Lisa Van Ahn on wellness and self-employment. RSVP encouraged.

FAMILY CONNECTSaturday, January 2511 AM – 1 PMSouthdale Library7001 York Ave. S. in Edina

Join us for lunch and time to connect. After lunch, Jessie Forston of Learning Tree Yoga & Meaningful Movement will lead an hour of relaxation exercises for families. RSVP by January 22.

SEA LIFE MINNESOTA AQUARIUM FEBRUARY 810-11:30 AMMall of America60 E. Broadway in Bloomington

Join us for a fun tour of one of the largest aquariums in North America! Meet and connect with other families affected by epilepsy as you explore over 10,000 sea creatures. FREE for youth with epilepsy, $5/additional person. RSVP by January 31.

AWARENESS DAY AT THE CAPITOL March 49 AM – 3:30 PM75 Rev. Dr. Martin Luther King Junior Boulevard in St. Paul

Raise epilepsy awareness with other advocates and make your voice heard! Lunch, materials and bussing from EFMN are provided. RSVP required by February 17. Program begins in the Rotunda – more details at efmn.org.

BRAINSTORMS ART COLLECTION Call for EntriesJanuary 1 – April 15

Showcase your talent as an artist affected by seizures in celebration of the 10th Anniversary of Brainstorms by contributing a piece of artwork. Contact [email protected] to participate.

ELAM BAER & JANIS CLAY EDUCATIONAL SCHOLARSHIPCall for ApplicationsJanuary 1 – April 1

Ten applicants with epilepsy will be awarded $1,000 scholarships for post-secondary education. Applications are available at efmn.org or contact [email protected].

DuluthADULT CONNECTMeets the 2nd Thursday of each monthJanuary 9, February 13, March 135:30-7 PMEssentia Health SMDC400 East 3rd Street in Duluth

Join us in the Minnesota Room across from the 1st floor cafeteria with facilitator, Kyah Altiere for a time of conversation, support and connection. RSVP encouraged.

WOMEN CONNECTMeets the 3rd Tuesday every other monthJanuary 21, March 186:30-8 PMSt. Luke’s Hospital915 East 1st Street in Duluth

If you or someone you love has epilepsy, this is a chance to connect with other women affected by seizures. Meet in conference room 337. Take middle elevators to 3rd floor, turn right down the hall. RSVP encouraged.

BOWLING & PIZZA PARTYJanuary 25 1-3 PMIncline Station Bowling601 W. Superior Street in Duluth

Hit the lanes and connect with old and new friends! FREE to people with epilepsy, $5/additional person.Shoes, pizza and soda included. RSVP encouraged by January 23.

Lisa Peterson - Duluth Outreach [email protected]

Diane White - Twin Cities Program [email protected]

Amanda Pike - Twin CitiesProgram Manager [email protected]

Nikki Baker - Twin CitiesSenior Program [email protected]

www.efmn.org

Vicki Snyder - RochesterOutreach [email protected]

Fargo

Amy Haugen - FargoOutreach [email protected]

WINTER WONDERLANDSaturday, February 221-3:30 PMIronwood Christian Springs Ranch7291 County Road 6 in Stewartville

Banish the wintertime blues with an adventure at Ironwood! Snow tubing, horse-drawn wagon rides, Clyde the Camel and hot chocolate/treats are provided. FREE to people with epilepsy, $5/additional person. RSVP by February 12.

ADULT CONNECTMeets the third Tuesday of each monthJanuary 21, February 18, March 186:30-8 PM Rochester Area Family YMCA709 1st Ave. S.W. in Rochester

Join us for an evening of conversation and connection with other adults affected by seizures. RSVP encouraged.

Rochester

RSVP :800.779.0777, ext. 2310 [email protected]

PARENT CONNECTMeets the 1st Tuesday of each monthJanuary 7, February 4, March 47-9 PMPediatric Therapy Partners3060 Frontier Way S. in Fargo

In January we’ll discuss “taking care of you” – a therapeutic chair massage will be available! In February, Moe Schroeder from Family Voices of ND speaks about programs/services for children. In March, adults will share experiences growing up with epilepsy. RSVP encouraged.

ADULT CONNECTMeets the 1st Monday of each monthJanuary 6, February 3, March 36-8 PMSanford Health South University CampusConference Room 1A-1

In January, Douglas Krenz from the Sanford Neuroscience Center will join us at 7:15. A staff member will join us to explain SSDI vs SSI in February. March is all about brain basics. RSVP encouraged.

FAMILY DAY AT THE MUSEUMJanuary 2510-11 AMNorth Dakota Museum of Art 261 Centennial Drive in Grand Forks

Join this community-wide event for families to participate in various projects together. Lunch buffet and time to connect with others at Happy Joe’s will follow the event at 11 AM. RSVP by January 4.

ART AT THE PLAINSMarch 1510:30 AM – 12:30 PMPlains Art Museum704 1st Ave. N. in Fargo

“Wild Things in the Museum” is a FREE event that invites families to explore the museum and make a fun art project! Refreshments provided. RSVP by March 1.

Lori Braegelmann - St. Cloud Outreach [email protected]

St. CloudADULT CONNECTMeets the 1st Thursday of each monthJanuary 9, February 6, March 67-8:30 PMGreat River Regional Library1300 W. St. Germain Street in St. Cloud

Connect is open to all adults (parents encouraged), affected by epilepsy, looking for support and information on living well with epilepsy. RSVP encouraged.

VALENTINE’S BOWLING PARTYFebruary 151:30 – 3:30 PMGreat River Bowl208 2nd Street S. in Sartell

Wear red! Bring your favorite Valentine to bowl and connect with others affected by epilepsy. Pizza & soda provided. FREE to people with epilepsy, $5/additional person. RSVP by February 10.

Camp Oz Registration Opens February 1

Camp Oz is June 15-20, 2014 at YMCA's Camp St. Croix in Hudson, WIRegister online starting February 1, 2014 at efmn.org

The last two years, Camp Oz had a waiting list and fills fast. Register early!

www.efmn.org

Documents

Newsletter - Winter 2014