I wish I had become aware of this article sooner - it is written by an amazing women with really great insights on the Stigma of Epilepsy and how children are affected.
Posted: 6/8/2010
Stop the stigma
Separate seizure fact from fiction.
By Tamirra Stewart
Published: April, 2010
http://www.ocfamily.com/t-KidHealth_epilepsy_seizures_facts_myths0410.aspx
I always say that if anyone sticks a wallet in my mouth when I’m having I seizure, I get to keep the contents.
Epilepsy is defined as “a medical condition that produces seizures affecting a variety of mental and physical functions.” It affects almost 3 million Americans of all ages, with approximately 200,000 new diagnoses every year, 45,000 of whom are under age 15.
Epilepsy’s myths are perpetuated by a public lack of knowledge. Wallet ingestion aside, we cannot swallow our tongues, nor do we need to wear helmets. We are not contagious; we are not violent; we are not insane.
“No other disorder is so common and yet so misunderstood,” says Dr.
Diane Stein, chief neurologist at Stein Life Child Neurology in Irvine (steinlifeneurology.com). “No other disorder can present itself so silently or violently. Those who have seizures look fine the majority of the time, and yet they’re often anxious with the knowledge that another seizure may occur at any time.”
In 400 B.C., Hippocrates wrote the first book about epilepsy. In it, he refuted the idea that epilepsy was a curse and was, instead, a brain disorder. We’ve been burned as witches, exorcised, sacrificed, thrown into nuthouses and inspired a whole lotta praying.
Epilepsy started to make its way from the asylum to the medical field in the mid-1800s, when three neurologists defined a seizure as “an occasional, excessive and disorderly discharge of nerve tissue on muscles.” Bingo.
A seizure is epilepsy’s way of sticking your brain’s fingers into a light socket. The Epilepsy Foundation describes it as “a brief, strong surge of electrical activity that affects part or all of the brain.”
A seizure can be blatantly obvious or extremely subtle, with only shivering, blinking or staring. Some people, including me, are “lucky” enough to get the variety pack – a little bit of everything.
The causes of epilepsy are clear in only a minority of cases. The most common is brain injury. Other causes are low oxygen during birth, genetic conditions that result in brain injury, extreme fever while young and infections such as meningitis.
“[People] likely know someone with epilepsy or a family member with epilepsy,” says Stein. “But they may not know that these people are affected. Why not? You don’t go telling people you have epilepsy – just too embarrassing.”
Trust me, it’s hard enough on adults. But children and teens have the onus of fitting in and being too young to understand why they’re different from everyone else.
“Eighty percent of children with epilepsy have a psychiatric or learning condition on top of the epilepsy,” Stein says. “And why not? They may have depression from the stigma, anxiety from the unpredictability and learning difficulties from the silent seizures.”
I’ve had epilepsy since 1991 – a result of a brain injury. Next month will be the first anniversary of saying publicly, “I have epilepsy.” On behalf of those who hold their silence: Awareness and acceptance can help open doors.
Sources
epilepsy.com
The Epilepsy Foundation – epilepsyfoundation.org
Epilepsy Alliance of Orange County – epilepsyalliance.org
Stein Life Child Neurology – steinlifechildneurology.com
Tamirra Stewart is a contributor to OC Family magazine.
- dstein's blog
- Login to post comments