When Saint Francis Hospital and Medical Center neurologist Mary Bailey was five, her father was diagnosed with multiple sclerosis (MS). Growing up in a household with MS shaped Dr. Bailey’s view of the disease, as well as how she relates to her patients – many of whom have the disease – and their families.
“I think that my experience gives me a lot of empathy for my patients,” she says. “I think about how they may be experiencing a new diagnosis, and how their family members might be experiencing the whole disease process.”
When Dr. Bailey was a child, her father’s MS diagnosis was a big secret. “I was very frightened of it,” she says. “I would watch him go through relapses during which he would be treated with intravenous steroids and would subsequently have side effects that were unpleasant for him. There was always this anticipation of what might happen next.” For this reason, Dr. Bailey says, she is passionate about educating patients and their families about the disease and its management.
Focusing on MS
As a high school student contemplating what she might want to study in college, Dr. Bailey reached out to her father’s neurologist, Dr. Timothy Vollmer, and asked if she could shadow him. She attended Georgetown University in Washington, D.C., but ended up returning to Connecticut during the summers to work with Dr. Vollmer at the Yale MS Center. “He really was the one who developed my interest in, and my basic knowledge of, MS,” she says.
Dr. Bailey, who grew up in Glastonbury and has always been very close to her family, always knew in her “heart of hearts” that she would eventually return to the Hartford area. She completed medical school, residency and a fellowship in MS/neuroimmunology at Yale University. She joined the Yale School of Medicine faculty when she finished her training, serving as Assistant Professor of Neurology and MS Fellowship Director at the Yale Multiple Sclerosis Center, Yale Department of Neurology.
She joined Saint Francis and The Joyce D. and Andrew J. Mandell Center for Comprehensive Multiple Sclerosis Care and Neuroscience Research team in May of 2016.
“One of the reasons I was so happy to join the Mandell Center was because it’s one thing as a neurologist to be able to make a diagnosis, pick a disease-modifying therapy, and identify symptoms that you want to help treat and manage in a patient,” says Dr. Bailey. “But it’s a whole different ball game to actually have the tools and resources at your fingertips to treat all those symptoms and help the patient improve his or her quality of life.”
The Mandell Center covers all aspects of MS care, and has providers in neurology, physiatry, urology (MS can affect bladder function), mental health services, and social work. It also has an extensive rehabilitation team that includes physical, occupational, and speech therapists. A team of specialists works with each patient to address all of their MS-related issues.
A disabling disease: Latest treatments offer protection
MS is a disease of the central nervous system in which the immune system attacks the protective covering of the nerves, disrupting the flow of information between the brain, spinal cord, and the rest of the body.
There are two main types of MS: relapsing and progressive. Those with relapsing MS – the more common form of the disease – alternate between periods of relative stability and relapses, the sudden development of new symptoms. Progressive MS is characterized by a progressive worsening of symptoms without distinct relapses and periods of recovery. Often, this is experienced as a decline in mobility.
Dr. Bailey says even though MS has these specific subtypes, each patient’s MS and disease course is unique. This is why there is not one right answer about what disease modifying therapy or symptomatic therapy is good for everyone. Treatment needs to be focused on the needs of each patient and to make these kinds of decisions, a good doctor/patient relationship is the key.
MS can present in many ways and some possible symptoms include optic neuritis (often painful, loss of vision in one eye), weakness in an arm or leg, or numbness and tingling that lasts for a prolonged period of time.
One of the most important diagnostic tests for suspected MS, she says, is magnetic resonance imaging (MRI), which can detect lesions in the brain or the spinal cord. Because common MS symptoms are not unique to this autoimmune disease, other diagnostic tools, such as blood tests or lumbar puncture, are often used to rule out other conditions.
In the past, Dr. Bailey says, doctors took a “watch and see” approach to MS treatment. “During that time, patients would accrue disability,” she says. “The way I use treatment now is the exact opposite. When patients have minimal or no physical disability, we treat them with highly effective MS medications to prevent relapses, the development of new lesions on MRI, and future neurologic disability.”
There is now an array of medications used to treat MS. All of these medications work in different ways, but have the same common goal – to prevent the body’s immune system from attacking the myelin that insulates the nerve. “These disease modifying therapies (DMTs) have protective effect against MS,” says Dr. Bailey. Some are given by infusion therapy; others by injection or orally.
Because the drugs differ in their mechanisms of action, efficacy, and impact on lifestyle, Dr. Bailey works with patients to determine the best therapy for them. She says it’s crucial that treatment begins early.
“If we treat MS properly from the get-go, the course of the disease can be much different from what we might have anticipated in the past,” she says. She emphasizes that physicians can’t go back and fix damage that’s already done, but once they know a patient is at risk, they can protect that patient from sustaining the damage in the first place. “I liken it to wearing a seat belt,” she says. “You don’t want to wait to put the seat belt on until after the accident happens.”
A personal quest: Educating both physicians and patients
Dr. Bailey says she is on a quest to educate patients and the medical community about using highly effective MS therapies early in the course of the disease. “I believe this treatment approach will change outcomes in this next generation of MS patients,” she says.
She plans to share her knowledge about MS with future physicians as well. The former fellowship director has been instrumental in creating a new MS fellowship program at the Mandell Center. The institution’s first MS fellowship position is available for July of 2018.
Dr. Bailey is also committed to educating patients. During patient education programs, she teaches them about MS medications, symptoms and management, and shares her own family’s experience with the disease. She conveys to patients and their families that the prognosis of people with MS has improved a great deal over the past few decades. “Getting a new diagnosis of MS today is not what it was even five years ago, because of all the wonderful treatments we now have,” says Dr. Bailey. “It’s no longer this automatic sentence to a cane, walker or wheelchair.”
However, regular imaging exams are important, she says, because MS can be “sneaky” – patients can be feeling fine and getting treatment, yet may be developing new lesions in the brain.
“It’s important to know if a patient is developing those ‘silent’ lesions because while it may take 10 or 15 years, many patients will eventually develop disability levels that correlate with their MRIs,” she says. “If we see that a patient is accruing new lesions despite being on treatment, we will want to switch them to a different medication.”
Beyond early treatment with the appropriate medication, and regular checkups and MRIs, Dr. Bailey says other therapies can help to alleviate MS symptoms and improve quality of life. Mental health therapy can help patients cope with the anxiety and depression that can be an intrinsic symptom of MS, as well as with the stress of coping with a chronic illness. Physiatrists and physical and occupational therapists can help address patients’ spasticity, walking impairment, and other physical needs. There are a multitude of MS-related symptoms that can be addressed by an MS neurologist and his or her team.
Dr. Bailey says that making healthy lifestyle choices – especially eating a low sodium diet, getting adequate vitamin D, not smoking, and exercising – is very important for people with MS.
“I want my patients to live as normal a life as possible,” she says. “I don’t want my patients to carry around a level of guilt thinking that if they eat a piece of pizza, they are going to cause a relapse,” she says. “I tell them to just live a great life, live a healthy life, and enjoy it as much as they can.”
Lori Miller Kase is a freelance writer living in Simsbury.
Photographer Seshu Badrinath of Avon specializes in intimate, natural portraits of families and children; seshuphotography.com
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