Some people who are new to epilepsy have a very simple concept of the chronic illness. They usually imagine only one specific type of seizure.
If you have a loved one that has epilepsy or maybe you have epilepsy, you have probably felt the need to study more about the chronic illness. After all, knowledge is power. As you study more about epilepsy, you find that it is actually very complex. There are many different types of seizures. There are epilepsy syndromes such as Lennox-Gastaut Syndrome. Your treatment options can also get very complex depending on the types of seizures that you have. We haven’t even started discussing side effects of the medicines yet.
I do not find this twitter quote to be discouraging in any way. Knowing how little you know about a chronic condition is wisdom. Most chronic illnesses are in their nature extremely complex to figure out or someone would have found a cure for it long ago.
Why are you blogging publicly, rather than keeping a personal journal?
I have had epilepsy for over 20 years. Many people who do not have the condition have misguided ideas on what to do or how to do when faced with an issue with a person who has epilepsy. (I do not pretend to have all the answers, because I am a patient and not a doctor.) I find writing the blog posts to be very therapeutic. I feel a sense of accomplishment knowing that in some small way I may have helped educate someone else out there about epilepsy.
What topics do you think you’ll write about?
Some of my blog posts will include helpful resources and coping strategies that I have found. I try to make sure the resources are genuine and are backed by either the Epilepsy Foundation, CURE, or some other epilepsy related non-profit.
The rest of the blog posts will include experiences from my personal life. Often, patients learn a lot from each other. Writing about your difficulties is not only therapeutic, but sometimes followers sometimes give good suggestions on how to solve your problem.
Who would you love to connect with via your blog?
I have three main categories of people that I would love to connect with:
fellow patients with epilepsy
fellow sufferers of chronic conditions – others with chronic illnesses or invisible illnesses would relate to some of the topics that I talk about.
various nonprofits that support patients of chronic conditions
If you blog successfully throughout the next year, what would you hope to have accomplished?
Throughout the next year, I hope to have the following accomplished:
I am very happy that they decided to do the article. It talks about one specific person’s struggle with epilepsy and the story helps illustrate some basic information about the condition. More articles by reputable newspapers such as US News are needed to help get rid of this stigma and misinformation. Epilepsy is a neurological disorder that does not have a cure. Maybe if more people understood it, then they would be willing to fund institutions attempting to find a cure.
The Epilepsy Foundation has developed some general first aid guidelines. If you are not sure what to do, the following steps are a great place to start. According to epilepsy.com, “Remember that for the majority of seizures, basic seizure first aid is all that may be needed.” For more information on any of these steps, check out the Epilepsy Foundation’s First Aid page.
Always stay with the person until the seizure is over.
Pay attention to the length of the seizure. Know when to give ‘as needed’ or rescue treatments, if prescribed, and when to call for emergency help.
Stay calm, most seizures only last a few minutes.
Prevent injury by moving nearby objects out of the way.
Make the person as comfortable as possible.
Keep onlookers away.
Do not forcibly hold the person down.
Do not put anything in the person’s mouth.
Make sure their breathing is okay.
Do not give water, pills, or food by mouth unless the person is fully alert.
Call for Emergency Medical help if
A seizure lasts 5 minutes or longer.
One seizure occurs right after another without the person regaining consciousness or coming to between seizures.
Seizures occur closer together than usual for that person.
Breathing becomes difficult or the person appears to be choking.
The seizure occurs in water.
Injury may have occurred.
The person asks for medical help.
Be sensitive and supportive, and ask others to do the same.
If you know the person personally, sometimes it is helpful to ask before a seizure occurs what they would like to have done in case they have a seizure.
The following video, created by Health Guru, describes partial seizures and the difference between simple partial and complex partial seizures. Many people are familiar with tonic-clonic (formerly known as grand mal) seizures, but are not as familiar with these types of seizures. Being able to recognize the type of seizure will help you figure out how best to help.
Not knowing what to do if someone else is having a tonic-clonic seizure can be scary. Knowledge is power! These videos were not created by myself, but are courtesy of the epilepsy therapy project. They help illustrate what to do if you see someone having a tonic-clonic seizure. They also help illustrate what you should do immediately after the seizure.
Disclaimer: This video does show someone actually having a tonic-clonic seizure.