The vast majority of people with multiple sclerosis (MS) have symptoms that appear then disappear, only to return somewhere else. The ups and downs of this aptly named relapsingremitting MS—on top of the disability it can cause—are frustrating and stressful.
But Karen Jackson’s type of MS, known as primary progressive multiple sclerosis (PPMS), is dishearteningly predictable. Accounting for only 10 to 15 percent of MS cases, this disease offers no breaks. Arms and legs get heavier, stiffer, and harder to move over time, without letup. It isn’t the type of MS researchers like to focus on when they’re developing new therapies.
“Drug companies want studies that show bigger, faster results, so they work with the chronic relapsing and remitting types of MS,” the 54-year-old southern Marylander says. There’s no therapy available for PPMS, and Karen and thousands of others, along with their loved ones, are waiting for one.
It’s a major reason why the support and advocacy of her physician, Peter Calabresi, has been so important. Calabresi, who directs the Johns Hopkins Division of Neuroimmunology as well as its Multiple
Sclerosis Center, met Karen Jackson in December 2003 when she came to Johns Hopkins. Her positive attitude in the face of her tough diagnosis moved him.
“Karen is the kind of patient who inspires all of us to work harder for a cure,” says Calabresi. “We are now starting to make real progress in understanding PPMS, in part due to people like her.”
Over the years, Calabresi has encouraged her to participate in studies in which her data could make a significant contribution to the field. She has endured six lumbar punctures (spinal taps) and stayed motionless in MRI tunnels for an hour or more at a time, all in the name of advancing PPMS research.
Jackson admits that participating in trials is not for everyone and that the choice is intensely personal. It’s important to her to stay connected with the community of researchers who are looking for answers, considering it her duty to be part of the discovery process.
“I assist by donating my time and participating in research and advocacy,” she says. “None of the experimental treatments has helped me, but I’m no worse off than if I hadn’t done it. And maybe some of my data can help someone else.”
In September 2013, Jackson and Calabresi spoke at a congressional briefing on National Institutes of Health funding for PPMS. Jackson said she was glad to put her face on the illness. “People can approach me and ask me anything,” she says. “It’s natural that they have questions about my illness. My symptoms are not invisible. I figure that’s why I’m here: to raise awareness.”
Regardless of what the future brings Jackson’s way, she still says she’s blessed, in large part because of Calabresi’s advocacy. “Some doctors forget they’re human,” Jackson says, “but Peter never has.”