Sebastian, Age 9
Sebastian’s mom is on a never ending quest for knowledge so she can be a better advocate for her son.
Here are some basic general facts about epilepsies that everyone should know — whether or not you have epilepsy.
1) Seizures come from the brain, and any brain can have a seizure so everyone needs to know seizure first-aid.
2) There are many types of seizures that look very different – some are convulsive and some are non-convulsive and can be as brief as a staring spell or a myoclonic jerk. It is important to be able to recognize different seizures and know how to administer appropriate seizure first-aid.
3) Most ‘seizure disorders’ are also known as ‘epilepsy’.
4) Seizures are symptoms of epilepsy. Epilepsy is the underlying tendency of the brain to produce sudden abnormal bursts of electrical energy that disrupt other brain functions.
5) There are different types of seizures and epilepsies that affect women and men of all ages, races, and ethnic groups.
6) Epilepsies are disorders/diseases of the brain with different causes, such as head trauma, genetics, inflammation, infection, brain malformation, stroke, birth injury and more. Previously, many were diagnosed with “idiopathic epilepsy” (an epilepsy of unknown cause or pathogenesis) but as knowledge of the brain and genetics increases, fewer epilepsies are actually idiopathic.
7) There are several types of treatments. Often seizures can be controlled by medication(s), dietary therapies, surgical treatment, lifestyle changes and/or implanted devices, but there are currently no cures. Some epilepsies remit (go away on their own). With the appropriate treatment many people with epilepsy can gain control of their seizures.
8) Seizures and epilepsies are far more common than most people realize. Over the span of a lifetime, 1 in 10 people will have a seizure, and 1 in 26 will be diagnosed with epilepsy. About 1% of the population currently has epilepsy — that’s about 160,000 in our region and about 65 million in the world.
9) The impact of seizures and epilepsy is significant and includes the risk of injury and early death. There are about 50,000 deaths in the USA each year related to sudden unexpected death in epilepsy (SUDEP) and other seizure related causes. It is important to know about safety measures and SUDEP prevention.
Being told you or a loved one has “epilepsy” or “a seizure disorder” may be quite a surprise. You may feel confused and concerned. You may even be in denial. We’re sure you have more questions than answers. That is why we’re here to link you to information, refer you to care and resources, and connect you to others who understand and can help.
There are some key things to know at the start of your journey, and you can then refer back to them as needed. We have information and resources so you can learn more about the epilepsies in general, about your type of epilepsy, how to manage your seizures, and advocate for yourself or your loved one. Link here to get more information.
Find a neurologist or epilepsy specialist so you can be evaluated and get the best treatments for your type of epilepsy. Let us know if we can help refer you to other types of care and resources. Find “Preparing for your doctors visit” and more in our digital Resource Center.
Many find it helpful to talk to others in a similar situation. Visit our Heroes page where you can read about others’ experiences with epilepsy. Join one of our Networks to stay informed about events where you and your family can meet others living with epilepsy. Connect with us via social media where you can also share your views and experiences on our Facebook page and Twitter feed!
We’re here for you. You can return here 24/7/365 for updates. Contact us any time at 310.670.2870 or HELP@ENDEPILEPSY.org.
Caring for your child can be a challenge as you learn a whole new “language” called “epileptology” while simultaneously trying to navigate the therapy world and/or the healthcare and education systems in search of help and answers. We want to do our best to partner with you through our Helpline, referral to care, supportive care programs, epilepsy education in school, and online information.
As your child’s best advocate, we know you intend to leave no a stone unturned as you ceaseless pursue the best treatment option(s) for your child.
In your quest to better document, manage, and care for your child’s epilepsy, we have provided information, tools and forms to help you ensure your child receives the proper epilepsy diagnosis and can better manage your child’s epilepsy from there. For more information about the epilepsies visit About Epilepsies+Treatment and the digital Resource Center.
We encourage you to start a record keeping book – paper or digital — with everything about your child in one place. This should include notes about seizure onset, how seizures appear, a seizure calendar, medical records, and treatments. Yes, you can request medical records from your child’s doctor.
Your child may need other therapies and special evaluations and we encourage you to pursue services with the Regional Center. We urge you to educate everyone around your child about his/her seizures and how to administer seizure first aid. We are confident that your openness to provide information and answer questions will alleviate the anxiety of others and help ensure your child is accepted, fully included and safe.
We encourage you to connect with other parents who are asking the same questions. Visit Get Help to learn about our programs designed to provide supportive care and connect you with other parents. At these events your child with epilepsy can make friends and enjoy just being a kid, and their siblings can meet other siblings who understand.
Being independent and free of seizures is something all adults wish for and strive for. For some it is a reality but for others it still is a dream and a future yet to be had. Regardless of where you stand on the spectrum of epilepsies, it is important to learn more about your epilepsy and how it affects you and those around you.
Here are a few ways to be proactive and empower yourself on this journey.
First, learn more about the epilepsies and empower those around you with information so they understand and know how to provide you with seizure first aid.
Second, care for yourself. The impact that epilepsy has on adults is varied and can be significant.
1) Take care of your overall health and live a healthy lifestyle, including a healthy diet,
2) Know and understand your epilepsy diagnosis,
2) Be in compliance with the best treatment(s) for you,
3) Know your seizure triggers,
4) Make lifestyle changes to avoid and prevent your seizure triggers, and
5) Continue to pursue information, resources, specialty care and/or second opinion if you are not seizure free.
Third, Get Help by participating in our programs and connecting with others. By speaking with others who have experienced the same issues, you can gain new insights to improve your own care and quality of life.
Four, know your rights as an adult with epilepsy and equip yourself with resources and tools to overcome challenges and to promote a safe and positive environment in which to thrive.
Fifth, if you are a woman, know the special information and issues that may impact your seizures. Find more in our Resource Center.
Sixth, your story and experience can make a big difference in the fight to End Epilepsy. Share your story. Your story can inspire others to get involved and donate and that will mean more resources for care and cures.
Visit the links below to learn more about the above and many more topics of interest to adults with epilepsy — sexuality, employment, rights, mobility, driving, women’s issues, pregnancy, and more.
We want healthcare professionals in our region to have access to the epilepsy information, downloadable tools and forms, and other resources that we make available to your patients and their families. Using the downloadable PDFs, as is, and giving appropriate credit, you are welcome to use and share the resources available in our online Resource Center.
Please encourage your patients to contact us directly and visit us online.
Epilepsy Foundation of Greater Los Angeles
EndEpilepsy.org Ι 310.670.2870 Ι Help@EndEpilepsy.org
As a healthcare professional caring for individuals/families affected by epilepsy, you can also get other information and resources on diagnosing and managing your patients with epilepsy from these organizations.
US National Library of Medicine, National Institutes of Health
Search PubMed.gov to find citations from biomedical literature from MEDLINE and more.
Help me control my seizures.
Empower me with information and resources so I can be the best partner in my own healthcare choices.
Help me get an accurate diagnosis of my type of epilepsy because that will impact my treatment choices and outcome.
I am more than my seizures or my EEG, so help me balance my fight for seizure freedom with other things in my life.
If needed, help me find a specialist and partner with them to help me manage my epilepsy.
Help me understand my seizure triggers so I can make lifestyle changes – like sleep and diet – to prevent seizures and improve my life.
Take my epilepsy seriously because seizures aren’t good and injury, early death and sudden unexpected death in epilepsy (SUDEP) are real. Educate me about SUDEP or refer me to the Epilepsy Foundation of Greater Los Angeles for information.
Don’t give up on my pursuit of freedom from seizures. I can’t.
Please refer your patients to the Epilepsy Foundation of Greater Los Angeles so they can get information and meet others so they feel less alone in this fight.
Use this section and the digital Resource Center to find resources for school nurses and other school personnel so they can best help students with epilepsy feel safe and achieve their full potential at school.
Safety and Seizure First Aid
Diastat and Related Issues
When it comes to supporting epilepsy research, we are proud to be leading all the other affiliates of the Epilepsy Foundation, nationwide, in donating the most money to epilepsy research. Since 2005, we have helped support more than nine epilepsy research projects at UCLA, UC Irvine, UC San Francisco and at institutions outside California.
Through our Enews and website we also actively bring research advances to our community and promote involvement and participation in research.
Finally, we are also active in advocating at the federal level for more funding for epilepsy research.
We encourage the community affected by epilepsy to learn more about research in progress and how participation in research might benefit the community at large.
We are glad to provide information on studies that have Institutional Review Board approval and are overseen by a medical center, hospital or clinic with an ethics review committee. To the extent information is made available to us, we are glad to provide the study name, a brief description of the study, a description of study participants needed, and a link to more study information and/or to contact information.
Please find below a description of some local research projects underway in our region. The contact information is provided so you can reach out to them directly with questions.
Study on SUDEP. Electrocardiographic Changes Associated With Stimulation of Intracranial Electrodes as a Novel Means to Elucidate Underlying Mechanisms of SUDEP. Improving our understanding of the brain-heart axis is paramount to diagnosing and preventing SUDEP. Although causes are multifactorial, cardiac arrhythmias are thought to be a major contributor to this process. We will first define the regions of the brain exerting influence upon the heart in patients with intracranial electrodes implanted for epilepsy monitoring, then we will evaluate cardiac structural and functional alterations that occur due to long-term seizures and arrhythmias, and finally correlate these findings with genetic mutations associated with cardiac arrhythmias as a possible screening technique for patients at high risk for SUDEP. Participants are patients undergoing invasive electrode monitoring.
For more information: contact Principal Investigator/Director, Sumeet Vadera, MD, UC Irvine Health, at 714.456.6966
Study on Status Epilepticus: The Established Status Epilepticus Treatment Trial is an emergency medicine research study designed to try to save and improve the lives of people who experience a seizure lasting longer than five minutes and have failed to respond to a full dose of benzofiazepine (like valium). RRUCLA Medical center is a local hospital participating in the ESETT study.
For more information: read the brochure or contact 310.794.0600.
Learn more about the epilepsy research, research grant opportunities and the application and review process established by the Epilepsy Foundation
Learn more about epilepsy research conducted and supported by the National Institute of Neurological Disorders+Stroke
Link here to learn more about Epilepsies+Treatments. The epilepsies are complex diseases of the brain characterized by different types of seizures of different causes and with different treatments. Those who are seeking more than basic or superficial information for general use will want to study the answers to questions like these:
What are seizures?
What is epilepsy?
What is the new definition of epilepsy?
What is the distinction between seizures and epilepsy?
Who can get epilepsy?
Why do some have seizures and others do not?
What are the signs or symptoms of seizures that indicate someone might have epilepsy?
What causes epilepsy?
When does epilepsy more commonly occur?
What should I do if I suspect a seizure disorder?
What are the types of seizures?
How is epilepsy diagnosed?
What are the treatments?
What types of doctors treat epilepsy?
What and who are epilepsy specialists or epileptologists?
How can I be most proactive in managing my epilepsy or my loved one’s epilepsy?
What should I know if I am a teacher or work in a school?
What is the impact of the epilepsies?
Where can I go to get more information?
SUDEP is Sudden Unexpected Death in Epilepsy. SUDEP refers to the death of a person with epilepsy who was in their usual state of health dies suddenly and unexpectedly. The death is not known to be related to an illness, accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found.
Our Resource Center is known as the Brian Alan Sitomer Memorial Resource Center. If you seek resources, tools, forms and downloadable information sheets, you’ve come to the right place. You will get help in seeking specialty care, knowing your rights, information on driving, public transportation, safety, school resources, and financial planning for your child with special needs.
The Resource Center also provides links to other organizations that provide information about epilepsy.
Our national Epilepsy Foundation also provides a wealth of epilepsy information at www.epilepsy.com
The purple boots belong to Stefani Rose,
a singer-songwriter-performer and a powerful
parent advocate of a child with epilepsy.