"Epilepsy is the neglected stepchild among neurological diseases.Epilepsy causes more than 50,000 deaths a year — more than breast cancer."
From the article:
Epilepsy is the neglected stepchild among neurological diseases. On a per-patient basis, it gets about 20 percent of the research money that Parkinson’s receives and about 50 percent of the Alzheimer’s total. These figures include contributions from the government, pharmaceutical companies, and nonprofit foundations. Most of the existing research has gone toward developing anticonvulsant drugs, but these have serious side effects and more than a third of epilepsy sufferers get no relief from them. Epilepsy causes more than 50,000 deaths a year — more than breast cancer.
And yet, as I have mentioned previously, people so often accuse epileptics of exaggerating or faking. They refuse to accept this is a serious disease.
Part of this misperception stems from the (usually) intermittent nature of seizures. People think that because (many) epileptics only experience seizures sometimes, the rest of their lives are worry-free. Those seizure-free days or weeks or months must be cake.
Part of it is because people figure anti-convulsants solve everything.
No.
The medications are a nightmare. Imagine living with the side effects: blurred vision, stomach upset, rashes, reduced white blood cells, inflammation, mood changes, and the list goes on. Of course, it depends on the person and the medication. I tried several medications back in the day. Every single one made me feel like crap.
And many epileptics find no relief from pharmaceuticals.
Forget medications for a moment. Consider how epileptics have to carefully construct every single day to avoid triggering seizures. They have to sleep well, eat right, exercise just the right amount (and at the right intensity), avoid stress (good luck with that), and sidestep a whole host of personal triggers.
Wild parties are out. Alcohol is dangerous medication or no medication (but perhaps especially with medication). For me, even occasional late-nighters spell danger. For some, certain lighting conditions are dangerous: strobes or even just the flicker of flourescent lightbulbs can spark seizures. Music even causes seizures for some epileptics.
Imagine avoiding music. It plays everywhere—the grocery store, the cafe, at church, the mall, even elevators. Church bells ring out and there is no escaping them. Imagine that. Imagine avoiding flourescent lights or strobe lights. Imagine dealing with the “flexible scheduling” policies of many employers, who expect 24-hour availability. Imagine asking for an accommodation for scheduling issues or other potential triggers on the job. Imagine the wrath of co-workers who think you are “getting out of” something. Or managers who brand you a thorn in their side. (Never mind that the ADA supposedly covers you. Oh, and if you need to assert your rights or sue? Prepare to taint your name and possibly never work again if words gets out.)
Hormonal birth control? Forget it if you take epilepsy medications.
Need an antibiotic? Prepare for possible seizures.
Plan on swimming at the gym? You better not do it alone.
Driving? If you aren’t seizure free, forget it.
Plan on taking a walk alone? Make sure you have identification and a medical bracelet. And don’t take anything too valuable. People have been known to pick-pocket epileptics while they convulsed on the sidewalk or floor. (I should know. This happened to me.)
And then are the auras, mood issues, depression, and non-stereotypical kinds of seizures that people really freak out about.
Prepare for police to not understand.
Not to mention those 50,000 deaths.
