Joanna Kempner was only 5 when her pounding headaches began. When Kempner’s mother sought answers, she was told by a physician that there was nothing that could be done. He said that Joanna had a Type-A personality. She needed to learn how to calm down.
Over the next 15 years, Kempner made the rounds to a number of different doctors hoping to find a remedy to help her deal with the devastating headaches that she, herself, diagnosed as migraines when she was in her early 20’s.
“I always tried to find the right preventative medication and to carry on with what I was doing the best that I could,” said Kempner, a professor in the Department of Sociology, School of Arts and Sciences, at Rutgers.
Motivated by her own personal experience, Kempner decided to make understanding migraines her mission. For more than a decade she has researched the sociological aspects of migraines and is in the midst of writing a book that explores migraines from a historical, societal and personal perspective. “ Migraine is a complicated and disabling disease, but it is widely perceived to be simple to treat,” added Kempner, who lobbied legislators in Washington last spring with the Alliance for Headache Disorders Advocacy asking for more support and funding for migraine research.
An estimated 37 million people – including children – suffer from migraines; another two to three million people like Kempner, suffer from chronic migraines, according to the Migraine Research Foundation. Moreover, the condition costs American employers more than $13 billion each year as a result of 113 million lost work days due to headaches or migraines.
Yet, says Kempner, this debilitating neurological condition gets surprisingly little respect. Many people, she says, including health care professionals and policy makers, do not take migraines as seriously as they should.
“The enduring image of the typical migraine patient is a white, middle-class woman who just isn’t good at handling stress,” she insists. “She is seen as neurotic and weak, a stigma that has been hard to change.”
This belief led Kempner to collaborate with neurologists from Thomas Jefferson University on a study in which 305 patients being treated for either episodic or chronic migraines or epilepsy were asked to rate how stigmatized they felt because of their condition.
The study, published this week in PLoS One, took place from 2009-2011 at the Jefferson Comprehensive Epilepsy Center in Philadelphia. It found that the chronic migraine sufferers –those who had at least 15 headache days a month – did, in fact, feel more stigmatized than those with epilepsy in large part because they experienced more disability and were often unable to work. The authors of the study believe that educating the public about epilepsy and offering support to those with the condition has been successful and insist that the same public policy needs to be extended to those living with migraines.
In writing her book, Not Tonight, which is under an advance contract with the University of Chicago Press, Kempner hopes to trigger a response from doctors, scientists, social scientists and those who fund migraine research. “Although there have been tremendous breakthroughs in the treatment of migraine, there still isn’t a consistently effective treatment,” she said. “We need to provide education and support to the millions of people who have to live with this chronic condition.”
Kempner hopes ongoing research will provide better medications for those who suffer from migraines, which tend to run in families. Studies show that if one parent is a migraine sufferer, their children have a 40 percent chance of having the same condition. If both parents are migraine sufferers that percentage jumps to 90 percent. In Kempner’s case, her mother, father and grandmother all suffered from migraines that can last from four to 72 hours.
“I was lucky that my mother understood what I was going through. I received the best care there was but it was not good enough,” said Kempner. “So I decided to make it my mission to try and find out why so few resources are allocated to migraine research and treatment.”