EFMN Pioneer Press special section
A Pioneer Press Special Advertising Feature â€˘ April 6, 2014 Celebrating 60 Years A Pioneer Press Special Advertising Feature EPILEPSY: Celebrating 60 Years 2 We Will Rise Above Seizures pilepsy is characterized by having two or more unprovoked seizures, and is also known as a seizure disorder. In the U.S., epilepsy has an equivalent prevalence rate to breast cancer (just under 3 million people). en why don’t we hear more about it? One word: Stigma. Seventeen states had laws preventing people with epilepsy to marry, and the last state to repeal these laws was in 1980! Until June of 1999, a state residence originally called the “State School and Hospital for Mentally Deficient and Epileptics” operated in Cambridge, MN. And according to a 2012 World Health Organization report, E (EFMN) 60th year of helping people with seizures realize their full potential. What can we do to raise public awareness Vicki Kopplin, Executive Director and reduce stigma in epilepsy is currently used the next 60 years? as justification to deny We’ve come a long way marriage in India and recently, with a courageous China. Big Ten college football is is all within the last coach and his family willing sixty years! e next 60 to stand up to stigma. years will be diﬀerent; we Ignorant comments in will rise above seizures. the media sparked a 2014 marks the Epilepsy movement across the Foundation of Minnesota’s country, propelling thou- sands of people aﬀected by epilepsy to say “no” to stigma. e next 60 years will be diﬀerent; we will rise above seizures. e unpredictability of seizures presents challenges in daily life. Can you imagine your first day of school, unsure if you will have a seizure? Or hoping a seizure doesn’t occur during a job interview? EFMN supports marathon runners, educators, CEOs of Fortune 500 companies and people from all walks of life who deal with this unknown every day. ese people define courage! e 60,000 people in our community with epilepsy deserve a life free from classroom bullying, employment discrimination and being told dreams aren’t possible. It’s time for everyone aﬀected by seizures to raise our hands and show that we refuse to be defined by seizures. EFMN helps people with epilepsy realize their full potential by providing educational resources and connection to others facing similar challenges. Our programs and services are FREE and served over 127,843 people last year in our community. We are working diligently to expand the number of people we serve in our 60th year and beyond. e next 60 years will be diﬀerent; we will rise above seizures. Josh of 93X Rises Above Seizures I Josh’s Story Many Minnesotans can thank a Highway Helper for a road rescue. I credit one for being first to identify a repeatedly misdiagnosed neurological disorder. at’s how my epilepsy story began. And a seemingly oand on-air remark late last year is what brings my epilepsy story here. In contrast to the nature of my job, and despite my pleasing aesthetics, I’m not comfortable with attention. I also don’t enjoy coﬀee. Yet aer mentioning on 93X that I have epilepsy, I recently found myself at a café with EFMN staﬀ, drinking coﬀee, embarrassed by becoming the focus of attention. Go figure. I’ve had seizures my whole life. As a kid they were misdiagnosed dozens of times, erroneously attributed to other things. It wasn’t until I became an adult that I was appropriately diagnosed. And like a radio personality achieving popularity in high school, the circumstances that finally led to my epilepsy diagnosis were unusual, and uncommon. At 23, I crashed in heavy 394 traﬃc. e Highway Helper who stopped to as- sist suspected epilepsy, which at first seemed farfetched. However aer two weeks of follow-up tests, his theory was confirmed. erefore, where physicians, ER doctors and others had failed - a yellow-vested Highway Helper proved a better diagnostician than the handful of white-coated PhD’s that came before him. Fortunately my seizures are now controlled eﬀectively with medications. It took three attempts to find one that worked best and about the same for a neurologist. I’ve now been seizurefree since 2007 – also the last year I had a full head of hair and abdominal definition. Side eﬀects of neurological drugs can be powerful and unnerving. Although not the potent, stimulating types of side eﬀects that sometimes inspire charttopping rock albums. Rather, a crushing sensation 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 a week at YMCA’s Camp St. Croix. Minnesota Epilepsy Group’s Dr. Frost has been the Camp Oz medical director for 20+ years – thank you Dr. Frost! justly deserve the attention. As do the families and places of work that show them support and care. In addition to friends and relatives I find support from my employer, my morning show partners Nick and Ali, and the brotherhood of 93X listeners. Many of which are mindful I have epilepsy, yet refuse to define me by it. For that I’m genuinely grateful. Likewise, I feel privileged to be asked by EFMN to be a part of what I have come to know as an important and worthy organization. I’m able to live a normal, albeit mostly boring life with epilepsy. Sure, epilepsy is not to be ignored, and can provide certain challenges – but my story demonstrates that it’s in no way a (morning) showstopper. 3 A Pioneer Press Special Advertising Feature Camp Oz of eternal exhaustion and perpetual slow motion. I work in a career that puts value on thinking quick on your feet, so finding a suitable medication was fundamental. I still feel foggy and a little drugged at times, however I realize that’s status quo for being medicated. Furthermore, I blame an early schedule, three kids, and perhaps most notably - radio station management. I’m very pleased with the meds I’m on, and the abundance of great neurologists I’ve met. Of course I wish I didn’t need to be on it, but I’m aware some with epilepsy take much longer to get seizures managed, and even some require surgery. So I’m fortunate. ose are the people who EPILEPSY: Celebrating 60 Years n the fall of 2013 when the media was buzzing about University of Minnesota Head Football Coach Jerry Kill’s seizure on the field, Josh Bitney talked about his own epilepsy on his 93X morning radio show. Excited phone calls and emails poured into EFMN from people saying, “Josh is talking about epilepsy on the air – someone is talking about epilepsy!” Fast forward six months and Josh is in a Dinkytown coﬀee shop with EFMN staﬀ, sharing his story, completely unaware that he inspired so many people. A Pioneer Press Special Advertising Feature EPILEPSY: Celebrating 60 Years 4 Questions & Answers from Q: What is Epilepsy? (Gerald Dove, M.D.) A: Epilepsy is used to describe a condition in which a person has a tendency for recurrent seizures. A seizure is what happens when the brain has abnormal uncontrolled electrical activity. Having a seizure does not necessarily imply epilepsy. is is due to the fact that some seizures can occur due to provoking factors (e.g. seizures that occur due to alcohol withdrawal and hypoglycemia). In these instances, when these situations or provoking situations are avoided, seizures never occur or recur. On the other hand, someone with epilepsy can have seizures, even when these situations are avoided. ere are many causes of Epilepsy, some inherited or genetic and others acquired, such as brain trauma, brain tumors, strokes or brain infections. medical management, requires further evaluation with an EEG (electroencephalogram) to help characterize their spells or seizures and/or to discuss other treatment options. Q: When should someone seek a specialist for epilepsy? (Tacjana Friday, M.D.) A: An epileptologist is a neurologist who specializes in the treatment of seizures and epilepsy, and has acquired expertise in seizures and seizure disorders, anticonvulsants and advanced treatment options such as epilepsy surgery. An epileptologist is mainly consulted when a patient has poorly controlled epilepsy requiring more complex Q: Will I be on anti-epileptic medication for the rest of my life? (Syed Shahkhan, M.D.) A: Most people with wellcontrolled seizures would like to stop taking their seizure medicines. In some cases, this can be done with the supervision of your doctor. You have the best chance of remaining seizure-free without medication if: • You had few seizures before you started taking seizure medicine • Your seizures were easily Epilepsy Experts Q: Seniors will be the largest population with seizures in the next five years. What special concerns might a senior need to know about epilepsy? (Rupert Exconde, M.D.) A: Epilepsy frequently affects seniors. Relative to younger populations, the over-65 age group has a higher prevalence of epilepsy. e clinical presentation of epilepsy in the seniors may be quite diﬀerent from what is typically seen in younger people. In addition, common illnesses of older people can be easily mistaken for epileptic seizures, and vice versa. Seniors are more likely to present with nonspecific symptoms, such as altered mental status, memory lapses, episodes of confusion and loss of consciousness. Because of the atypical presentation, the diagnosis is usually delayed by several months 5 even in the care of an experienced neurologist. Q: What is SUDEP? (Rupert Exconde, M.D.) A: SUDEP (sudden unexpected death in epilepsy) is the leading cause of epilepsy-related deaths. It accounts for close to 20% of deaths in individuals who suﬀer from epilepsy. It is diagnosed if death occurred while the patient is in a reasonable state of health, death happened during normal and benign circumstances, death was not the direct result of a seizure or status epilepticus (prolonged seizure) and an obvious medical cause of death could not be determined at autopsy. Known risk factors for SUDEP include: young age (25 to 35), male gender, developmental delay, use of alcohol and recreational drugs, uncontrolled generalized convulsive seizures, night time seizures, concurrent use of multiple anti-seizure medications, subtherapeutic anticonvulsant levels, and treatment other than medication (surgery, vagus nerve stimulator, ketogenic diet). e goal for decreasing the risk for SUDEP is optimal seizure management. Adherence with medication intake is essential. Avoidance of alcohol, illicit drugs, seizure-provoking situations, and high-risk situations (e.g. driving, swimming) are of paramount importance. EPILEPSY: Celebrating 60 Years controlled with one type of medicine • You have normal results on a neurological examination • You have a normal EEG Most doctors will consider tapering the dosage and discontinuing your seizure medicines aer a seizure-free period of 2 to 4 years. A decision about whether to stop taking seizure medicines should only be made aer a long conversation with your neurologist, weighing all the risks. A Pioneer Press Special Advertising Feature Rise Above Seizures Balloon Launch May 15@2pm A Pioneer Press Special Advertising Feature EPILEPSY: Celebrating 60 Years 6 or our 60th anniversary, we'll be releasing 60,000 balloons in recognition of the 60,000 people in our community with epilepsy. On ursday, May 15 at 2pm, individuals and organ- F izations across MN and ND will be taking part in our balloon launch event. is is an eco-friendly event – we consulted with both the MN Pollution Control Agency and the MN Department of anks to Savers Stores for hosting balloon filling stations! Natural Resources. To get your FREE balloon, go to RiseAboveSeizures.com. And please use #RiseAboveSeizures in sharing your photos and videos of the event. Stroll for Epilepsy on August 7, 2014 Join us for the largest/awareness event to benefit people with epilepsy in MN and ND! is family-friendly walk 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 priceless. Over 3,400 people Strolled with us on 2014 and we expect even larger crowds in our 60th anniversary year. Convenient online registration opens on April 15 at efmn.org. The Latest in Epilepsy Research E control, rather than preventing or stopping the progression of the disease. • We know now that the vast majority of funding goes to incremental improvements in anticonvulsant medications (which are largely ineﬀective for about 40% of patients) rather than to uncovering underlying mechanisms that may lead to cures. Did you know Minnesota is an important home to epilepsy research? e University of Minnesota, Minnesota Epilepsy Group, Mayo Clinic and others are paving the way with new studies and dedicated staﬀ studying epilepsy. Check out these upcoming epilepsy Epilepsy Facts conference is in Minneapolis June 19-22 at the Hyatt Regency. e goal of this three-day learning event is to prevent mortality in A Pioneer Press Special Advertising Feature • Epilepsy aﬀects more Americans than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’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 aﬀects 50,000,000 people. • More than 60,000 people in our community have epilepsy – enough people to overflow TCF Bank Stadium. research events in Minnesota: • e international Partners Against Mortality in Epilepsy (PAME) epilepsy through a rigorous scientific meeting of researchers, clinicians and people aﬀected by epilepsy • e Epilepsy Foundation of Minnesota will host its second epilepsy research summit on Saturday, November 22 at the Bakken Museum in Minneapolis. Leading clinicians and researchers from Minnesota will share current epilepsy research and connect with others in the field. “In this country alone, one in 26 people will develop epilepsy in their lifetime. For their sake, we must continue to be vocal advocates for making epilepsy research a national priority.” -Susan Axelrod, Founder of CURE Epilepsy. EPILEPSY: Celebrating 60 Years pilepsy research is critical to finding a cure and stopping seizures. New therapies emerge each year, ranging from deep brain stimulation to extended-release medications. Yet epilepsy, which has higher prevalence rates than other conditions, is woefully under-funded. Here are some highlights from CURE’s 2013 “State of Research in the Epilepsies” report to shed light on the current state of epilepsy research: • Per patient funding of epilepsy research continues to be inadequate to create long-overdue breakthroughs. • Basic and clinical epilepsy research is still primarily focused on seizure 7 A Pioneer Press Special Advertising Feature EPILEPSY: Celebrating 60 Years 8 Your Used Clothing Sends Kids to Camp Oz! e Foundation collects used clothing and home items, with convenient curbside pickup available online at efmn.org. 100% of the proceeds from your donated items support free programs and services for people with epilepsy. See what a diﬀerence your donations make: • 300 bags sends a child with epilepsy to Camp Oz • 135 bags educates a child’s classroom about epilepsy • 20 bags allows an adult to attend an Visit efmn.org or call 651.287.2300, epilepsy education conference ex. 3 today to put your used items to work for people with seizures! EFMN By the Numbers FREE Trainings to Make Your Workplace, School or Church “Seizure Smart!” Because 1 in 10 people will have a seizure in their lifetime, knowing seizure 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 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 similar challenges • 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.