Shirley Kessel couldn’t wait for her wedding day to be over.
It was simultaneously the happiest day of her life and the most painful, as she experienced one of her debilitating episodic migraines.
“I not only had a horrible migraine, but I had sore feet from those darn cute shoes I was wearing,” she laughed. With mind over matter, she powered through.
She may laugh about it now, but migraines still are a constant battle for Kessel today.
She started having chronic migraines in her early 20s, but few treatment options were available then.
Her mother also experienced episodic migraines; every three to four weeks, she’d spend two to four days in bed, completely overwhelmed by the disease.
“It was difficult to navigate my life with so little information,” she added.
When Kessel had children of her own, two of her three daughters began experiencing migraines, one of whom’s are chronic — meaning she had 15 or more headache days a month, along with other symptoms like nausea, light and sound sensitivity, dizziness, cognitive impairment, and migraine aura, a visual disturbance.
Her daughter was only 16 at the time; it was so debilitating she had to leave high school.
“I was pretty devastated,” Kessel recalled. “She missed going to a lot of the social events all her friends were going to. The worst part for me was the day that should have been her [high school] graduation, she watched all her friends go to graduation and … watched them go off to college and she stayed home for another year.”
That’s when Kessel discovered Miles for Migraine, based in San Francisco. A former active member of Hadassah of Greater Philadelphia, Kessel said she learned a lot about nonprofit work and volunteering, enough that she brought a Miles for Migraine chapter to Philadelphia.
The national nonprofit spreads awareness about headache disorders and raises money to find a cure for migraines through 5K and 10K walk/run races across the country.
Miles for Migraine hosted its fifth annual Philly race Oct. 7 at Wissahickon Park, with about 600 in attendance. Other races take place in Chicago, Phoenix and Washington, D.C.
The money raised will go toward Thomas Jefferson University Hospital, Children’s Hospital of Philadelphia and a collaborative research program between Jefferson and the University of Pennsylvania.
In 2016, Miles for Migraine raised more than $100,000 for migraine research grants, which was dispersed to the University of California, San Francisco, Headache Center ($45,000), Loyola University Headache Medicine Fellowship ($25,000), Jefferson Headache Center ($25,000), Children’s Hospital of Philadelphia Headache Medicine Fellowship Research Program ($10,000), and Alliance for Headache Disorders Advocacy ($15,000).
“There’s races for almost every other disease,” she laughed, “and migraine is really just getting started.”
Yet Kessel, now the executive director of the national organization, said migraine research is extremely underfunded. Of the more than 36 million people who suffer from migraines, only approximately 525 headache specialists are certified in the country.
“There’s not enough people in the country to treat people with migraines,” said Kessel from Lafayette Hill, who belongs to Beth Tikvah-B’nai Jeshurun. But the reason for the lack of funding comes from the stigma.
Migraines are often misunderstood as simply headaches — something Advil or Tylenol can’t fix — and people with them are viewed as weak, especially women.
“It’s an invisible condition. You can’t see when someone’s experiencing the symptoms,” she said, “and pain is very subjective.”
It’s the second-most disabling in the field of neurology worldwide — more than Alzheimer’s disease — according to The Lancet medical journal.
Seventy percent of people who experience migraines are women, but many don’t feel comfortable discussing their condition for fear of losing job prospects or being portrayed as unreliable or weak.
“It’s costing the U.S. economy billions of dollars every year to people missing work and school because of a disability that I don’t think the public realizes how debilitating it is,” she added.
Kessel now has migraines every other day, a common factor for women with migraines as they get older. She has her own routine of medications: a prescription for a non-steroidal anti-inflammatory drug (NSAIDs); Migranal, an old drug often in the form of a nasal spray; Compazine for nausea; and many others, if the first three don’t do the trick.
The cause of the genetic disease is still unknown.
As for her daughter, a trial drug improved her migraines, and the now 21-year-old is enrolled at George Washington University.
“People don’t understand because it’s an invisible disease,” she added, “and they don’t appear to be sick. People with migraines do a really good job of masking their symptoms because most people don’t want to hear about your bad day and how you’re feeling.”
[email protected]; 215-832-0737