One Step at a Time
Diagnosed with multiple sclerosis two years ago, the owner of a Kentlands ballet studio won't let the disease rule her life
Multiple sclerosis is an autoimmune disease; the body attacks itself. Dr. Jack Burks, a neurologist and chief medical consultant to the Multiple Sclerosis Association of America, has studied MS for more than 50 years and is responsible for helping to build many of the MS treatment programs around the country.
Burks explains how the disease works: The nerves connected to the brain and spinal cord make up the central nervous system and are surrounded by a white fatty substance called myelin. The substance acts like the insulation that coats electrical wiring. MS damages the insulation and causes messages from the brain—say, to raise your arm up and down—to short-circuit.
Burks says fatigue is an early symptom. Double or decreased vision can follow because the nerves connected to the eyes aren’t receiving the proper messages. Pain and numbness in the face, limbs and other parts of the body, overall weakness, dizziness, and vertigo are all symptoms. MS can also affect the bowels, the bladder—causing incontinence—and sexual function. Hot weather, stress and overwork can trigger a flare-up. The disease also can go into remission for days or years before symptoms reoccur.
Nearly 1 million adults in the United States are living with MS, according to a 2019 study by the National Multiple Sclerosis Society. That’s more than double the number reported in a similar survey done in 1975. Most people are diagnosed between the ages of 20 and 50, and “at least two to three times more women than men” are found to have MS, according to the study.
Burks says symptoms can lie in wait for years before revealing themselves. What MacDonald experienced that day in the sauna is called Uhthoff’s phenomenon, which occurs when MS symptoms worsen as the body overheats, according to Smith.
When MacDonald was diagnosed, she was an outwardly healthy, vibrant, physically fit woman and an accomplished dancer—she once dreamed of Broadway but found a more rewarding calling as a ballet teacher and mentor. “As a 28-year-old, Hope was extraordinarily typical,” Smith says.
Why the disease struck her is unclear because its causes remain a mystery. Experts speculate that genetics or environmental factors could play a role. MacDonald has relapsing-remitting MS, the most common form. She has done extensive research and speculates that her immune system did not develop fully as the result of her premature birth at 32 weeks, leaving her vulnerable to the disease. Or perhaps it was the mononucleosis she had in her early 20s; researchers are studying whether the immune system and viruses, among other factors, play a role in triggering MS.
Of the four types of MS, MacDonald’s form is the least debilitating. She experiences relapses and remissions, and has been hospitalized a total of eight weeks since her diagnosis. The symptoms associated with the other types of MS worsen over time and there’s no bouncing back.
Until 1993, when the Food and Drug Administration approved the drug Betaseron, there was no approved drug treatment for MS. Now there are 17. MacDonald takes Rituximab, a drug approved for treating other conditions including lymphoma that is also used to treat MS.
The medications are designed to stop the formation of brain lesions and slow the progression of the disease, according to Joan Ohayon, a nurse practitioner at the National Institute of Neurological Disorders and Stroke at NIH.
“I think there’s a lot of hope out there,” says Ohayon, who has worked in the field for more than 25 years. “The landscape has changed. I don’t think MS should keep anybody from doing anything they want to do with their lives.”
But to MacDonald, lying on the bed in the ER as Smith put a name to her fears, MS evoked images of deteriorating capabilities and wheelchairs. She worried that she no longer would be able to dance. But soon, her innate self-confidence and pragmatism began to kick in.
“I was so relieved it wasn’t a brain tumor, and I now had a diagnosis that I would figure out how to tackle,” she says. “I asked if I would end up in a wheelchair, and Dr. Smith very matter-of-factly said, ‘Well, maybe if you are, God forbid, in a car accident or something. This disease is not the disease it was 20 years ago.’ ”