epilepsy's scourge

Before I had Calvin I thought that epilepsy was a benign disorder where you take a pill and everything is okay. That myth couldn't be further from the truth.

Epilepsy is as prevalent as, and more lethal than, breast cancer, and tragically it often plagues children. Even so, and because of its long and recent history of fear, shame and stigma, it remains an obscure, underestimated, misunderstood, stigmatized and grossly under-funded disorder.

Epilepsy is the second most common neurological condition and afflicts about one in one hundred Americans. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined, and its incidence is on the rise. One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime.

The mortality rate of people with epilepsy is two to three times higher than the general population. The risk of accidental death is 24 times greater. Ten percent of people who die from epilepsy and related causes die from SUDEP: Sudden Unexplained Death in Epilepsy, which is not completely understood but is thought to occur as the result of cardiac arrest or suffocation during a prolonged nocturnal seizure. Our son Calvin is in one of the highest risk categories for succumbing to SUDEP.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the government's funding and at least ten times the funding from private entities as compared with epilepsy. People with epilepsy, and parents of children with epilepsy, often hide their affliction for fear of discrimination, resulting in a colossal insufficiency of advocates.

In as many as 40% of cases, seizures are not fully controlled with medication. But even those who are fortunate to be seizure free on drugs still suffer heinous, often debilitating side effects from medications and must remain on those drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions, though sadly—miserably—medications are no more than band-aids, which mask the symptoms but do nothing to solve the root cause while enducing consequences of their own.

Give what you can to CURE epilepsy now: http://www.calvinscure.com

photo by Michael Kolster


  1. Nicely written and very informative -- I'm especially struck by the Big Pharm stuff. It enrages me and is one of the reasons that I dissociated myself from the EFA given what I thought to be their incredible ties to the pharm industry. While I appreciate their efforts to educate and improve the lives of children with epilepsy and their families, I am more encouraged by the efforts of organizations like CURE that are cutting-edge and led in more productive and meaningful ways by parents like ourselves. Here's to a cure, however elusive.

  2. I just got back from a direct action workshop and was just thinking this morning about planning a rally at Pfizer or UCB or one of the other Big Pharma companies. Probably after I graduate haha. I'll keep you posted!

  3. Don't assume all information regarding epilepsy is released. After 10 years I have decided the only people who had less regard for epileptics were Nazis using them to perfect gas chambers. Who needs a gas chamber if you have a prescription pad? My letter to government officials: I have contacted the U.S. government concerning what I believed to be evidence of continuing post WW II eugenics programs via the pharmaceutical industry’s development of dangerous porphyrinogenic drugs released on the U.S. market. The U.S. Department of Justice told me in a telephone call that I would need to prove intent to harm. I can prove a lack of disclosure of critical information concerning this class of genetic disorders, continuous horrific drug reactions worldwide and drug refractory epilepsy.I can also provide evidence that hereditary coproporphyria found in my family may present as seizures in infants and children (including febrile seizures) with continuous epileptic brain damage resulting from the use of anticonvulsants. Specifically, anticonvulsants rank near the top as dangerous drugs for porphyrics experiencing symptoms (including seizures) along with barbiturates and sulfonamides. I can also prove information exists regarding the endocanniboid system and the use of ingested marijuana to calm seizure activity, while our government is maintaining a ridiculous classification of marijuana as a Class I narcotic, thus blocking research. I can also prove our government has ignored the pharmaceutical industry’s corporate ties to U.S. clinical laboratories needed to help diagnose these genetic disorders, specifically Lab Corp and Quest Diagnostics. I can also state that my cousin who lost a brother and son from drug-refractory epilepsy had his Y chromosome analyzed and found a connection between a Swiss ancestor who immigrated to this country in the early 1700s and the Y chromosome of Jewish populations--plus our family name on Holocaust death lists from 3 different countries.