Saturday, May 9, 2009


NPR's Talk of the Nation broadcast recently Living with the Uncertainty of Epilepsy. A classmate of mine called me in the middle of the afternoon to tell me it was on. It's a great discussion.

More people die every year from epilepsy than breast cancer., according to the guest speaker. Hmmm... According to the American Cancer Society, 40,930 people are expected to die from breast cancer this year. How many people die from epilepsy? Well, drowning because you have a seizure is likely to be reported on the death certificate, since the person drowned, regardless of the cause. There is a small number of people who do die directly from seizures. It is quite certainly not over 40k. Who among the listeners questions that statement, if they have a loved one with epilepsy?

Well, I did, simply becuase I wanted to know how many people do die. I've seen the figure 812/yr, but it was from a semi-reliable source (which means it might be right). It wasn't from MMWR or some other über-reliable source.

There isn't even a single definition of what constitutes epilepsy. It's usually like Stewart & pornography: I won't try to define it, "but I know it when I see it."(1)

Take one guess about who gets more money? Dispersal of money for medical research is a boutique solution. It's like pets: the cute animals get picked first. The obsession with modern feminism has made breast cancer chic. Women with it look just like women without it. Unless she's going through chemo, it isn't going to be noticeable. Breast cancer shows up later in life; she's likely live most of her life without it. Epilepsy shows up with little children and often lasts the rest of your life. Breasts are more attractive than brains.

A description of the drug I take: The exact way lamotrigine works is unknown. You tell me whether people have anti-cancer drugs that are used without understanding how they work?

In the past two years I've had more problems with managing my epilepsy. ("more" being a pretty relative term, compared to others' "1 per day" or "4 or 5 per day".) I switched medications. I've had wierdo events that I'm not even sure if they're seizures, I'm assuming they are simply because I have epilepsy. But my neurologist opines that one simply doesn't remain aware during seizures, therefore this couldn't be a seizure. I had a seizure when I was 8 months pregnant with Jr.Gopher#2. The idea of going swimming with Mr.Gopher in lake Michigan was nice ... but so far away from the rest of the world with relatively trecherous water ...? No. One of the editors at the Lansing State Journal had a daughter who drowned at the age of 25, from a seizure. I was at her funeral. While I cry at funerals anyway, this seemed to be the end of such a full life. I was 37 or so at the time.

Yet I am left with a large minority who have well-controlled seizures for whom the only major inconvenience is remembering to take my medicine twice each day. Well, actually pacifying the Minnesota DMV is really annoying, but only an annual intrusion. I'm horrified at the stories of the majority of people with epilepsy, especially parents/kids coping with the idiots inhabiting our society. I told my classmates I have epilepsy, and their response was either "oh?" or "are you doing okay with school?" I didn't have anyone run away from me. I'm sure their response would have been the same if it was one of my kids. Jr.Gopher has epilepsy? Sure, we can get together on Sunday for the kids to play together. As opposed to people who get freaked out about it.

If you have the chance to convince some millionare to spend her money on something worthwhile, try the Epilepsy Foundation.

(1) Jacobellis v. Ohio, 378 U.S. 184, 197 (1964)

1 comment:

ccyager said...

Oh, yeah, of the three chronic illnesses I have, only psoriasis gets a lot of money and they are constantly fundraising. Crohn's disease is finally getting some attention because of biologics, but it (and ulcerative colitis) aren't "sexy" enough and don't have famous people acting as spokespeople, like Montel Williams for MS, for example. Sjogren's Syndrome -- I'd heard of it because a college friend developed it not long after she graduated, but otherwise it's not well known. Fundraising is problematic.

It's really too bad that money is so necessary to life.....