Since this is Epilepsy Awareness month as well as a fundraiser for a little boy with epilepsy, Bradyn’s mom Elizabeth has provided a guest post talking about some of the misconceptions surrounding the condition.
Would you know how to help? The more I talk about Bradyn and Epilepsy the more apparent it becomes that there is a serious lack of information out there. So it’s time for B’s Mama to do some educating.
Epilepsy is not:
1 – Epilepsy is NOT contagious.
2 – Epilepsy is NOT mental illness.
3 – Epilepsy is NOT mental retardation.
And here are a few of the things that I have learned about Epilepsy:
1 – Epilepsy is sometimes called a seizure disorder; some people with epilepsy do not even know they have it because they’ve been told they have a seizure disorder instead. This unfortunate euphemism arose because of the stigma associated with epilepsy, a stigma that the Epilepsy Foundation and others are fighting to dispel. Bradyns diagnosis went down this path. After his first seizure we were told not to worry it was just a febrile seizure and would probably never happen again. Five seizures later we sat down with a Neurologist who diagnosed “seizure disorder” I can’t even count the number of times I told people “no, he doesn’t have Epilepsy, he just has a seizure disorder”.
It wasn’t until we traveled to California in April of this year to see a new neurologist that I really understood what was happening to him. She looked me in the eyes and said “Mrs Chavez, your son has chronic seizures, with no known cause. That means he has Epilepsy. I would advise you to educate yourself so that you can help him deal with this.”
2 – A SEIZURE has a wide variety of possible symptoms, depending on what parts of the brain are involved. They are caused by intermittent electrical and chemical disturbances in the brain. Many, if not all, types of seizures cause loss of awareness and some cause twitching or shaking of the body. Some seizures may be hard to recognize because they consist of staring spells that can easily go unnoticed. Occasionally, seizures can cause temporary changes in sensation or vision. Some seizures cause a loss of consciousness. Sometime the brain remains aware but the body does things that can’t be controlled, muscle movement such as twitching that might spread up or down an arm or leg, muscle tension/tightening that causes twisting of the body, head, arms, or legs.
3 – Epilepsy is:
- An equal opportunity life changer, it can affect children, adults, seniors, men and woman, people of all races, religions, ethnic backgrounds, and social classes at any time.
- The most prevalent serious neurological disorder of childhood and the third most common neurological disorder in the United States after Alzheimer’s disease and stroke.
- Equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined.
- Currently affecting more than 326,000 children under the age of fifteen in the United States.
- A family of more than 40 syndromes that affects more than 3 million people in the U.S. and 50 million worldwide.
4 – The mortality rate among people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population. This year an estimated 25,000 to 50,000 will die of seizures and related causes, including status epilepticus (non-stop seizures), sudden unexpected death in epilepsy (SUDEP), drowning and other accidents.
5 – The leading non-medical problem confronting people with epilepsy is discrimination in education, employment and social acceptance. Of major chronic medical conditions, epilepsy is among the least understood, even though one in three adults knows someone with the disorder.
Would you know how to help someone having a seizure?
Lack of knowledge about proper seizure first aid exposes affected individuals to injury from unnecessary restraint and from objects needlessly forced into their mouths.
FIRST AID
- Do NOT attempt to force a hard object (such as a wallet, a spoon or a tongue depressor) between the teeth. You can cause more damage than you can prevent.
- Do NOT try to hold the person down during the seizure.
- Turn the person to the side if vomiting occurs. Keep the person on his or her side while sleeping after the seizure is over.
- If the person having a seizure turns blue or stops breathing, try to position their head to prevent their tongue from blocking their airways. Breathing usually starts on its own once the seizure is over.
- CPR cannot be performed during the seizure, once the seizure is over check to see if the person is breathing if not you can start CPR at that time.
- If the seizure lasts for more than 5 minutes call 911.
- The person having the seizure may lose control of their bodily functions. Cover them with a blanket or jacket to respect their privacy.
If a person has repeated or prolonged seizures without regaining consciousness or returning to normal behavior, the body may develop a severe lack of oxygen. This is an emergency situation. Call 911.
AFTER THE SEIZURE
Treat any injuries from bumps or falls. Record details of the seizure to report to the person’s primary health care provider. You should note the following details:
- How long it lasted
- What body parts were affected
- Type of movements or other symptoms
- Possible causes
- How the person behaved after the seizure
Thank you for taking the time to read this. These are the things that I would want you to know if Bradyn were going to your house. 1 in 10 people will experience a seizure in their lifetime, don’t you feel better knowing how to help if you are around when it happens to someone? Now that you know, please help me spread the word.
If I have missed anything please feel free to let me know in the comments.
For more info visit The Epilepsy Foundation. (Their website is where I got all of my data)
This is great information. Thanks so much for sharing. I wish I knew some of this earlier.
There was a man who had epilepsy who used to come to a restaurant I worked at years back. He was the nicest guy, but sometimes he would have a seizure while he was there. No one really knew how to deal with it or even what we should do to deal with it, which made it even scarier when it did happen.
And now… off to read some of the other posts I missed while, um, sleeping. (Sorry, Jessica – But don’t worry, I slept some for you!) 😉
Over the years, I have known several people who suffered from epilepsy. It is a frightening disease and one little understood. I know that many years ago, people with epilepsy were locked away because the disease was not understood. I’m glad things are changing. This post is a great way to raise awareness!
This is a topic close to my heart. My brother-in-law has brain tumours that give him regular, and generally rather severe seizures (of the grand mal variety). He’s had brain surgery twice now. It’s not something I had ever thought about before, the kind of stigma attached to epilepsy, but when I saw him struggling to find and keep a job… It was heart-breaking. No one wanted to hire him because he was a liability, what if he had a seizure at work and fell off a ladder? That’s a worker’s comp suit just waiting to happen, right?
It took him almost 12 years to find a company that would employ him, regardless of his problems. The hurt, shame, and frustration he went through was something that stayed with me into my adulthood. How was he supposed to support his family if every potential employer was treating him like a walking time-bomb, a leper?
So when my boyfriend was diagnosed with epilepsy, I was prepared. Well, as prepared as I could be. It’s frightening to see the person you love above all else seizing, even worse, for me at least, is the after-effects. The memory problems, the irrational angry outbursts, the glazed look in his eyes when the paramedic asks, “Do you know who she is?”
Rather than deal with biased employers, I helped him get on disability benefits so he could have the freedom to choose what he wants to do, to find something where people aren’t going to give him strange looks, or think of him as a liability.
Thanks for raising awareness about epilepsy.
You say (accurately):
Epilepsy is not:
1 – Epilepsy is NOT contagious.
2 – Epilepsy is NOT mental illness.
3 – Epilepsy is NOT mental retardation.
Epilepsy is also not heart disease, not diabetes, and not a blood disorder. Out of all the categories of illnesses in the world, why did you choose mental illness and mental retardation as conditions to compare against epilepsy?
A great deal of stigma exists against the mentally ill and mentally retarded. Just today, in fact, in an article posted on Huffington Post, Glenn Close cites that “Over 57.7 million Americans — 26 percent of the country — live with a diagnosable mental illness in any given year. Yet two-thirds of those affected never seek treatment in large part due to the stigma of being labeled “mentally ill,” and the resulting discrimination in social relationships, housing and employment.”
I know I’m being sensitive to your choice of medical conditions, and I certainly do not mean to imply that those who have epilepsy are any less fearful of public perceptions of their illness, but I can’t help but understand your comparison of epilepsy to mental illness and mental retardation as intending to paint mental illness and mental retardation as villainous illnesses when you lump them with “contagion”.
Thank you for hearing me out.
Jen.