July 30, 2021
A decade ago, Stephanie Buxhoeveden was diagnosed with multiple sclerosis. It changed her life.
At the time, she was a competitive athlete and a successful critical care nurse in neurology. Now, Buxhoeveden, 34, is a Ph.D. candidate at the Virginia Commonwealth University School of Nursing and has dedicated her career to understanding and treating the disease. To help in that effort, in July Buxhoeveden became one of just four nurse practitioners nationwide to earn a grant this year from the American Association of Nurse Practitioners, which will help fund her research.
“MS is so different [in how the disease affects individuals],” Buxhoeveden said. “Some people have MS for 30 years and never have an attack. And [for] some people, it is relentless and terrible from the beginning. But right now, the treatment algorithm is pretty much the same no matter how you present.”
Multiple sclerosis is called a “prime of life disease.” Onset normally begins in a person’s 20s or 30s. At the time of her diagnosis, Buxhoeveden was 25 and in the best shape of her life. She was a driven professional and competed in weightlifting.
MS impacts the central nervous system and causes a deterioration of motor function over time. Buxhoeveden had a hard time accepting the diagnosis.
“I was like, ‘No, this is a sports injury,’” said Buxhoeveden about her conversation with her health care provider at the time. “‘It’s fine. I’m fine. You’re lying to me.’ Denial was the first stage.”
Within a few days, the evidence became apparent. She was given an MRI of her brain and spine, and with her background as a Neuro ICU nurse at Georgetown University Medical Center, she understood what the images meant. She had multiple lesions along her spine, which were created during MS attacks.
Dedicating her life to MS
At the time of her diagnosis, Buxhoeveden had started a program at Rutgers University to become a certified registered nurse anesthetist, but doctors recommended that she slow down. Because stress and fatigue can be a trigger for MS, doctors felt she could not handle school or other strenuous activities.
“I was like, ‘Nope, that’s not my personality,’” Buxhoeveden said.Stephanie Buxhoeveden. [View Image]Stephanie Buxhoeveden.
Instead, she dove headfirst into understanding MS. Within six months, she became an MS certified nurse through the International Organization of Multiple Sclerosis Nurses and took a position at the Barnabas Health Ambulatory Care Center in New Jersey where she was being treated. Buxhoeveden met with numerous MS patients and reviewed literature on the disease. She saw patterns and realized huge gaps existed in the research.
“I started to get frustrated that there weren’t answers to some of the most basic questions like, ‘Why do I have MS?’ ‘Why is my MS way worse than my friend’s MS?’” Buxhoeveden said.
MS has two forms: relapsing-remitting and progressive. The relapsing form is characterized by sudden MS attacks and then remission. Progressive, as the name implies, becomes progressively worse over time. Women, in general, are more likely to be diagnosed with MS, but more often get the relapsing form. Men tend to have more severe cases that are progressive.
Buxhoeveden wanted more answers. She decided to transfer programs at Rutgers and became a nurse practitioner. She continued to treat patients but was being drawn into research. She thought there had to be better ways to treat MS rather than simply classifying people into two different groups.
Entering a Ph.D. program
Four years ago, Buxhoeveden applied to the Ph.D. program at the VCU School of Nursing and was accepted. Her research focuses on ways to better understand the different presentations of MS and develop protocols for treatment.
Theresa Swift-Scanlan, Ph.D., professor and director of the Biobehavioral Research Lab at the school, is Buxhoeveden’s doctoral research adviser and has been impressed with the doctoral candidate since the day they met. Swift-Scanlan knew Buxhoeveden did not have a lot of experience in the lab, but her passion and drive were unmistakable.
“During the interview process, when she was applying to be in the Ph.D. program, we just started talking,” Swift-Scanlan said. “I told her, ‘Tell me what you want [to study in our program], and we’ll figure it out.’ So, after she was accepted to the program, we sat down and met, and I said, ‘OK, as a clinician, what do you think are some of the big question marks, some of the big unknowns in managing MS?’ And then we talked about biomarker discovery to narrow the phenotype.”
“MS is so different. Some people have MS for 30 years and never have an attack. And [for] some people, it is relentless and terrible from the beginning. But right now, the treatment algorithm is pretty much the same no matter how you present.”Stephanie Buxhoeveden
Buxhoeveden wants to understand what role both genetics and a person’s environment have on MS’ presentation. Scientists understand that factors such as sunlight and sex hormones seem to play some role in how the disease progresses, but more research is needed.
Buxhoeveden related her work to cancer research. Doctors can take a sample of a cancer cell and classify the specific form of the disease. Treatment is built around that knowledge. Right now, treatment of MS is often trial and error, Buxhoeveden said.
“Cancer specialists try to figure out what particular type of tumor a patient has and use that information to tailor their treatment regimens to achieve the best result possible,” she noted.
Getting the grant
Two years ago, Buxhoeveden stopped working with patients so she could spend more time in the lab. She began applying for grants to fund her research. The grant from the American Association of Nurse Practitioners will give her an opportunity to gather a range of blood samples of people with MS. She continues to seek other funding to help her analyze the samples and begin writing her dissertation. If all goes according to plan, she could earn her Ph.D. in the next two years.Stephanie Buxhoeveden. [View Image]As she dove headfirst into understanding MS, Buxhoeveden realized huge gaps existed in the research. “I started to get frustrated that there weren’t answers to some of the most basic questions like, ‘Why do I have MS?’ ‘Why is my MS way worse than my friend’s MS?’” she said.
Many of the treatments for MS — much like chemotherapy for cancer — have side effects. Buxhoeveden knows it would be easier to make treatment decisions if the health care provider understood the specific form of the disease and then the risk versus reward could be measured. If a person has a severe form of the disease, a more aggressive treatment option could be prescribed.
Swift-Scanlan said she is confident that Buxhoeveden will find the money to complete her work. Her approach to MS treatment is too important, and Swift-Scanlan wants to make sure Buxhoeveden is successful.
“I think her biomarker discovery work, together with our work and the work of others, has a strong chance of making a difference for MS patients,” Swift-Scanlan said.
As far as her disease, Buxhoeveden has found treatment options that work and has learned to live with MS. She has permanent lesions in her brain and on her spine that cause her to have limited feeling in her legs, but she is grateful to have not experienced massive amounts of fatigue like some patients. She knows the disease has changed the trajectory of her life but is hopeful her research can help others.
“Ten years later, and I’m doing great,” Buxhoeveden said. “We really do have highly effective treatments.”
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