How One Boy's Fight With Epilepsy Led To The First Marijuana-Derived Pharmaceutical

 Evelyn Nussembaum and her son Sam Vogelstein pick up a six month supply of Epidiolex from the experimental pharmacy at UCSF.

Evelyn Nussembaum and her son Sam Vogelstein pick up a six month supply of Epidiolex from the experimental pharmacy at UCSF.

The first prescription medication extracted from the marijuana plant is poised to land on pharmacists' shelves this fall. Epidiolex, made from purified cannabidiol, or CBD, a compound found in the cannabis plant, is approved for two rare types of epilepsy.

Its journey to market was driven forward by one family's quest to find a treatment for their son's epilepsy.

Scientific and public interest in CBD had been percolating for several years before the Food and Drug Administration finally approved Epidiolex in June. But CBD β€” which doesn't cause the mind-altering high that comes from THC, the primary psychoactive component of marijuana β€” was hard to study, because of tight restrictions on using cannabis in research.

Sam Vogelstein's family and his doctors found ways to work around those restrictions in their fight to control his seizures.

Sam's seizures started in 2005 when he was four years old. It's a moment his mother, Evelyn Nussenbaum, will never forget. The family was saying goodbye to a dinner guest when Sam's face suddenly slackened and he fell forward at the waist.

"He did something that looked like a judo bow after a match," says Nussenbaum.

Two months passed before Sam had another seizure, but then he started having them every week. Eventually he was suffering through 100 seizures a day.

"When they were bad, they were once every three minutes," Nussenbaum says.

A roller-coaster ride

Sam was diagnosed with epilepsy with myoclonic-absences, which is characterized by an abrupt unresponsiveness and then sudden body jerks. The episodes were quick, but dangerous.

The electricity in Sam's brain would misfire for about five to 20 seconds, enough time to fall down stairs, plunge face first into a dinner plate, or crack his head on a window.

"I don't remember a lot of it really," says Sam.

He does remember the barrage of medications his doctors put him on. Some helped briefly. Others triggered hallucinations, full body rashes and uncontrolled anger.

"Sam is a pretty gentle person, " his mother says. "We put him on one medication and it made him angry, and he started punching kids. And it was like, 'Oh my God, this is not my kid.' "

More than 3.4 million Americans have epilepsy, according to the Centers for Disease Control and Prevention, but treating the disease is often a riddle doctors find difficult to solve.

Sam struggled to read, to write, to solve math problems and Nussenbaum watched her son fall further and further behind in school.

Full Article by: NPR.org

Victor MadrilComment