#AimForZero

Phil Gattone on #AimForZero

 

The Epilepsy Foundation SUDEP Institute, comprised of leading epileptologists and epilepsy organizations, is urging people living with epilepsy to start aiming for zero sudden deaths with these actions:

  1. Take medication as prescribed
  2. Get enough sleep
  3. Limit alcohol and illicit substances
  4. Strive to stop seizures

Social media platforms offer people living with epilepsy and the people caring for them opportunities and forums to discuss important issues about how to aim for a life without seizures and reduce their risks for sudden unexpected death in epilepsy (SUDEP).

The Epilepsy Foundation recognizes that for 3 out of 10 people living with epilepsy, a life without seizures is not within reach right now. However, starting with the actionable behaviors recommended here, and working towards the best seizure control possible, may help reduce the risk of SUDEP in people living with epilepsy.

Join the #AimForZero Awareness Campaign

  • Talk about how you #AimForZero with your family, friends, co-workers, neighbors, and community leaders and ask them for any support you may need.
  • Talk to your health care providers about how your risk for SUDEP and how you can #AimForZero seizures to reduce your risk.
  • Write about it on any appropriate list serves you belong to.
  • Use the #AimForZero messages provided below in your social media accounts, blog, or community newsletter to spread awareness among your family, friends, and followers.
  • Transitioning into adulthood and taking on more responsibilities while managing a health condition can feel overwhelming. Our series of “#Adulting with Epilepsy” messages share strategies and tips for young adults and millennials living with epilepsy who face these challenges. Share our #Adulting messages, which focus on seizure-management behaviors for a millennial audience.
Together we can reduce the risk of seizures and sudden death in epilepsy and save lives.

Sample Messages for Longer-form Social Media Platforms

(Such as Facebook, Google Plus, and LinkedIn)

  • 1 out of every 1,000 adults living with epilepsy die from sudden unexpected death in epilepsy each year. But even one death from seizures is too many! Join the SUDEP Institute in encouraging people to help #AimForZero deaths from seizures. Learn more at epilepsy.com/aimforzero.
  • These actions may reduce your risk of SUDEP: take medication as prescribed; get enough sleep; limit alcohol and illicit substances; and strive to stop seizures. Talk with you health care team now about your risks for seizures and SUDEP! Get started learning how to #AimForZero risks at epilepsy.com/aimforzero.
  • When people with epilepsy and their caregivers are empowered with information to understand the risk of seizures and SUDEP, they can take action to reduce risk of harm. Share and encourage others to #AimForZero risks from seizures. epilepsy.com/aimforzero/about-sudep
  • Read Dr. Daniel Friedman’s summary of the professional guideline on SUDEP by the American Academy of Neurology & American Epilepsy Society. Learn about the process used to develop the guideline and find recommendations health care professionals can use to care for their patients with epilepsy and talk with them about SUDEP risks. epilepsy.com/sudep-guideline-professionals
  • Dr. Joseph Sirven and Dr. Cynthia Harden talk about the American Academy of Neurology and American Epilepsy Society professional SUDEP Guideline. Listen to the podcast: bit.ly/2rAE84x
  • Learn what the American Academy of Neurology and American Epilepsy Society SUDEP guideline means for you and your loved ones, as well as how to improve your seizure control. Learn more: epilepsy.com/what-does-sudep-guideline-mean
  • If you or your loved ones are still having seizures one year after diagnosis, make sure you seek out specialty care, which may mean finding an epilepsy center: epilepsy.com/epilepsy-center #AimForZero misdiagnoses: epilepsy.com/aimforzero/stop-seizures.
  • Learn about the risks of seizures and SUDEP, then talk to your health care team about your risk factors and how you can strive to #AimForZero harm from seizures. Learn more at epilepsy.com/aimforzero/stop-seizures.
  • Living with the best seizure control possible and aiming for zero seizures should be a goal all people with epilepsy and their health care providers strive to reach. Learn more at epilepsy.com/aimforzero/seizure-control. #AimForZero
  • People with 3 or more generalized tonic-clonic seizures a year have a 15-fold increased risk of SUDEP. Find out how you can #AimForZero risks of SUDEP at epilepsy.com/aimforzero.
  • When medicine is missed or taken irregularly, people are at greater risk of having seizures. Find help to #AimForZero missed medications at epilepsy.com/aimforzero/take-medication.
  • If you have trouble taking your medicine as prescribed, talk with your health care provider to make sure you understand your treatment plan. Find tips for how to #AimForZero missed medications at epilepsy.com/aimforzero/take-medication.
  • “A single missed dose of medication can cause a seizure, even if a dose has been missed many times before without a seizure. Taking medications is a must,” says Dr. Orrin Devinsky of NYU Langone Comprehensive Epilepsy Center. #AimForZero epilepsy.com/aimforzero/take-medication
  • Sleep problems are often seen in people with epilepsy. You may need testing to find the cause of poor sleep. Find tips for getting a good night’s sleep: bit.ly/2xYGJsk #AimForZero Lost Sleep: epilepsy.com/aimforzero/get-enough-sleep
  • Research shows that there is a significant relationship between sleep deprivation and seizures in people with epilepsy. Find help to #AimForZero lost sleep at epilepsy.com/aimforzero/get-enough-sleep.
  • Find tips on how to improve your sleep at epilepsy.com/trigger-lack-sleep. #AimForZero Lost Sleep
  • SUDEP often happens at night, so people with epilepsy are encouraged to use a seizure alert device or share a bedroom with someone who can provide seizure first aid. Sleep Safe. #AimForZero SUDEP epilepsy.com/aimforzero/get-enough-sleep
  • Seizures at night put you at higher risk for SUDEP. Use a device to detect seizures at night or share a bedroom so someone is alerted or there to help. Talk to your health care provider about night time seizures and what’s right for you. Find help to #AimForZero seizures at night at epilepsy.com/SUDEP-alert-devices.
  • Seizure medicines can lower a person’s tolerance for alcohol. Learn about alcohol and epilepsy at bit.ly/1yVe3dr. Limit Alcohol. #AimForZero Seizures
  • All people with epilepsy are at a high risk of seizures after drinking three or more alcoholic beverages. Limit Alcohol. #AimForZero Seizures epilepsy.com/aimforzero/limit-alcohol
  • The Epilepsy Foundation believes even one seizure is not acceptable. So we support new therapies research to work toward no seizures for all people living with epilepsy. epilepsy.com/research #AimForZero Seizures
  • For 7 out of 10 people living with epilepsy today, their seizures can be controlled with available therapies and good seizure-management practices including the support of an epilepsy specialist. Strive to #AimForZero seizures by adding an epileptologist to your team: epilepsy.com/find-specialist
  • There are many steps people living with epilepsy can take to control their seizures. Explore all your options to stop seizures. Learn how you can strive to #AimForZero seizures at epilepsy.com/aimforzero/strive-stop-seizures.
  • People with the most severe types of difficult to control epilepsy can take steps to lower their risk of SUDEP. One option is to participate in research to find new, more effective therapies. Learn about clinical trials and research at bit.ly/1tlXlAD. Strive to #AimForZero Seizures
  • You can strive to #AimForZero seizures by exploring all treatment options, including new and add-on medications, surgery, devices, and dietary therapy, with an epilepsy specialist. Learn more at epilepsy.com/aimforzero/strive-stop-seizures.
  • In a video from The Charlie Foundation, Dr. Jeff Buchhalter says, that while there has not been research confirming the ketogenic diet reduces the risk of SUDEP, "the circumstantial, connecting evidence is very strong. So when asked, ‘Is the ketogenic diet an important thing to do with regard to reducing risk?’ I answer, ‘Yes.’” Watch this video and hear more from Dr. Buchhalter (https://youtu.be/4hcdelKqB94) and read a commentary by our SUDEP Editor, Dr. Daniel Friedman: bit.ly/2x2FWpW. #AimForZero Seizures and SUDEP
  • Identifying and tracking seizure triggers can help you make lifestyle changes to avoid seizures. Learn how you can strive to #AimForZero seizures at epilepsy.com/aimforzero/strive-stop-seizures.
  • “If seizures are not controlled, it is important to seek specialized care. Epilepsy specialists often can increase the likelihood of seizure freedom using medication, surgery, or devices,” says Dr. Jacqueline French, chief scientific officer for the Epilepsy Foundation and professor of neurology at NYU. epilepsy.com/aimforzero/strive-stop-seizures #AimForZero
  • "The consequence of providers’ hesitance to discuss SUDEP is that patients and their family members are uninformed about the possibility of sudden death due to epilepsy, whether from SUDEP or other causes of epilepsy-related mortality (e.g., status epilepticus, accidental drowning, suicide)," says Wendy Miller PhD, RN, CCRN. Here’s help to start the conversation with your health care provider so you know your risk and can #AimForZero: bit.ly/1uYOOQe.
  • Attention health care providers: in a recent survey, 40% of people living with epilepsy and nearly 50% of caregivers said learning more about SUDEP could make a difference in how they approach seizure control. Talking about SUDEP can save lives! Help the people you care for #AimForZero. Find help starting the conversation at epilepsy.com/aimforzero/for-professionals.
  • How can talking to your doctor help reduce SUDEP risk? “Keep yourself informed about everything there is to know about your epilepsy. Work with your doctor to develop a treatment plan and stick to it,” says Dr. Joseph Sirven, editor-in-chief of epilepsy.com and professor of neurology and chairman of the Department of Neurology, Mayo Clinic, Arizona. epilepsy.com/aimforzero #AimForZero

#Adulting with Epilepsy

  • We're sharing how #adulting with epilepsy can help you #AimForZero seizures and reduce your risk for SUDEP. #Adulting tips include: taking your medications on time, getting plenty of sleep, limiting your consumption of alcohol, and speaking with your epileptologist about all treatment options. bit.ly/2dQBoWv
  • Want to teach your friends your new #adulting ways? Share messages from our social media guide to encourage more people to #AimForZero during National Epilepsy Awareness Month. bit.ly/2eaUkC2
  • Strive to #AimForZero seizures by tracking your seizure triggers by using My Seizure Diary. Identifying your triggers can help you reduce your #SUDEP risk and make #adulting while living with epilepsy that much easier. epilepsy.com/get-help/my-epilepsy-diary
  • The ultimate #adulting? Giving back! Talk to your doctor about being part of the solution for others and participate in a clinical trial. epilepsy.com/aimforzero/strive-stop-seizures

Sample Messages for Character-limited or Short-form Social Media Platforms

(Such as Twitter or Instagram)

#Adulting with Epilepsy

  • #Adulting is setting a phone alarm to remember to take your medicine. #AimForZero http://bit.ly/2dY8155
  • #TFW your friends have a hangover but you don’t because you didn’t drink at the party. #Adulting Limit Alcohol #AimForZero Seizures http://bit.ly/2dAzf2z
  • Sleeping enough to #AimForZero seizures & avoiding hitting the snooze button = #Adulting! Learn more: http://bit.ly/2dyVIRc
  • #AimForZero has four key #Adulting tips to help you manage your epilepsy like an adult & reduce your risk for SUDEP http://bit.ly/2dQBoWv
  • Are your seizures still uncontrolled? Your #adulting task of the day: Schedule an appt with an epileptologist. http://bit.ly/1JvahMX
  • Need more help in #adulting while living with epilepsy? Sign up for Texting 4 Control to get helpful tips! http://bit.ly/1wyYEP7
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Authored By: 
The Epilepsy Foundation SUDEP Institute
Authored Date: 
11/2017