Listen up, multiple sclerosis: You don't mess with Beth Broun. The fast-talking, black-clad native New Yorker, who was diagnosed with an aggressive form of multiple sclerosis in 2010, is determined to halt the progression of the autoimmune disease that is laying waste to her central nervous system. Broun, 50, walks with a cane and has to deal with daily ignominies such as weakness in her left leg and hand, severe drop foot, bladder problems, and faulty balance ("I look like I'm drunk when I walk without a cane," she says), but that doesn't stop her from waging all-out war against her disease. "MS is not for pussies—write that down," she says in an interview at her home in Woodstock. "I exercise like an animal at the gym every day and do tons of yoga and Pilates. I'm very conscious of food and eat no wheat or dairy. I practice Buddhism and chanting—that's another piece of the puzzle, you have to get spiritual. My mantra is 'Stop progression.' I'm a little over four years into this, and hey, I'm still walking."
Now Broun has another big gun on her side: her Manhattan-based neurologist, Saud Sadiq, MD, who is heading up a trailblazing FDA-approved stem cell trial for MS that's already showing promising results. It's important to note that these are not the controversial stem cells derived from human embryos—in this trial, the regenerative, powerhouse cells are harvested from the patient's own bone marrow. One year into the Stage I trial to determine the procedure's safety, preliminary results show early improvements in five out of nine patients, many of them badly affected by progressive MS. One patient, a mother of two, can now walk without a cane for the first time in six years and has regained sensation and function that she thought was lost forever. It's too soon to tell if the effects will last or if they'll transfer to a larger body of patients. But Broun and many others in the MS community are feeling something they hadn't dared to feel before: hope.
"One of the challenges in taking care of these patients is, can we repair neurological function? [In this trial] we're using the body's own stem cells to heal, because that would be a natural way of replacing lost cell structure," says Sadiq, who directs the Tisch MS Research Center of New York and runs his own state-of-the-art clinical facility next door, the International Multiple Sclerosis Management Practice (IMSMP). "So far, we haven't had any bad outcomes. It's early and we have to be cautious—there's a lot of work to be done. At least the trend we've seen in the first patients we've treated is that the procedure is safe and well tolerated." As for the unprecedented improvements in some patients, he adds, "We're very encouraged by these early results that we may actually be on to something."
Oh My, Oh Myelin
For Broun, meeting Sadiq was like finding a life raft in a sea of medical ineffectiveness. Her journey with MS started long before her diagnosis, when one spring day, walking along the Upper West Side with her husband, her left foot suddenly refused to budge. She went to a neurologist at Mt. Sinai Hospital who put her into physical therapy for six months and ordered an MRI of her lower back (not the place to find MS, which is in the brain and spinal cord). Broun had a high-powered, high-stress job selling ad space for Condé Nast—and very little time to seek the second opinion that she finally received two years later from a doctor at NYU. "He said, get your head into an MRI, and I did. In his office the next day, there was a picture of my brain on the wall and I said, wait a minute, do I have cancer? He said no. I said, do I have a brain tumor? And he said no, you have MS. I said, great, what's that?" Suffice it to say, Broun would soon learn everything about her disease—in which a misfiring immune system attacks the body's own healthy cells that produce myelin, the fatty substance that coats the nerves. With a loss of myelin, the nervous system literally short-circuits and cannot conduct electrical impulses across long distances—such as from the brain to the leg when walking.
Fast forward to more doctors and a slew of useless pharmaceuticals. "They put me on a medication that you inject every day, but it did nothing for me—it was a year of torture, sticking myself with needles," remembers Broun. Next came a pill, Gilenya, that wasted another two years with no results but carried a risk of serious side effects. One of Broun's doctors, who "had the bedside manner of my left toe," walked into the exam room one day when she was crying hysterically because her legs were burning in pain—and all he could say was "I hope you have a good psychotherapist."