November is Epilepsy Awareness Month!
Epilepsy is a central nervous system disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness.
There are many types, but we wanted to highlight a couple of rare forms of epilepsy, that doesn’t get as much attention.
Lennox–Gastaut syndrome (LGS)
Lennox–Gastaut syndrome (LGS) is a rare and severe form of epilepsy that begins in childhood. Children with LGS have frequent and many different types of seizures, including:
- Atonic seizures, which are characterized by sudden loss of muscle tone causing the individual to collapse
- Tonic seizures, which cause muscle stiffening and are most common when the individual is asleep
- Absence seizures, which are prolonged episodes of seizure activity when the individual blankly stares, blinks rapidly, and nods head
Dravet syndrome is a severe form of epilepsy that begins in the first year of life. It’s characterized by frequent, prolonged seizures often triggered by high body temperature (hyperthermia), developmental delay, speech impairment, ataxia, hypotonia, sleep disturbances, and other health problems.
But one thing we wanted to focus on is something all of us can commit to – and relate to.
For anyone with a disease, part of the struggle is dealing with society and perceptions. And while we’ve made progress in so many big ways, sometimes it’s the little things we overlook; like words.
Word choice can make such a difference, so here are some examples to keep an eye on.
Like most of us in disease awareness communities, people with epilepsy often prefer not to be labeled or defined by their diagnosis, such as describing someone as an ‘epileptic.’
Remember – a disease (in this case epilepsy) is what one has, not who they are.
The preferred terminology is “person living with epilepsy” – whereas using epileptic as an adjective (i.e. “epileptic seizures”) is appropriate.
The feeling is that the word ‘fit’ in this way connotes mental derangement or loss of emotional control. Some associate the word with the symptoms of rabies in animals. Seizures, or, in some cases, convulsions, is preferred. Convulsion is a more specific term that more aptly describes a single type of seizure involving muscle contractions throughout the entire body. Not all epileptic seizures are convulsions.
The word ‘controlled’ should be used as it relates to whether or not an individual’s seizures are controlled.
In other words: Seizures are controlled with medication and treatment, persons with epilepsy are not.
“Controlled epileptic” in particular should always be avoided as it gives the impression that the person needs to be restrained from willful, aggressive behavior.
The adjective “violent” as a description of a seizure is also unfortunate. The term implies a threat to others and a force that is out of control.
Remember – words matter!
How are you supporting Epilepsy Awareness Month? Share your stories, thoughts, and hopes with the Patient Worthy community!