Every year in the U.S., about 10,000 people are diagnosed with a neurological disorder that most have never heard of: multiple system atrophy (MSA). Similar to Parkinson’s disease but with more debilitating symptoms, MSA also affects the autonomic nervous system, which is responsible for such basic bodily functions as bowel and bladder regulation, sweating, digestion, and blood pressure.
“It’s a terrible disease and a progressive one,” said Steven Vernino, M.D., Ph.D., founder and Director of UT Southwestern’s Multiple System Atrophy Clinical Center (MSA-CC).
The disease’s mysterious cause, the certainty of its trajectory, and the people whose lives it touches have motivated Dr. Vernino and those who work in the clinic to devote their expertise and energy to treatment and research and to compassion. In the nine years since the Center’s inception, over 200 MSA patients have been cared for in this special clinic at UT Southwestern.
“We have a careful approach,” Dr. Vernino said. “We let them know what the disease is about, and what those affected by it can expect. We usually have a few years to get to know our patients to provide support for them and their caregivers. It’s a journey.”
For the exceptional work that the clinic’s providers do, UT Southwestern has been named as one of the first MSA Centers of Excellence by the Multiple System Atrophy Coalition. Clinics nationwide submitted applications to be considered for the designation, which is based on their ability to provide the highest quality of multidisciplinary care. Recipients were selected by an international scientific advisory board and receive a $10,000 annual grant in addition to the accolade.
Jessica Iregui, Research and Medical Education Manager for the Coalition, said UTSW aligns with the group’s vision: to create a top-notch standard of care for MSA patients, caregivers, and their families.
“Within these Centers of Excellence,” Ms. Iregui said, “a multidisciplinary team coordinates care to ensure those impacted by MSA receive a comprehensive, gold-standard continuum of care.”
In addition to UT Southwestern, 18 institutions nationwide were named MSA Centers of Excellence including Brigham and Women’s Hospital, Massachusetts General Hospital, Stanford University, and the Mayo Clinic.
“Many of these centers I have collaborated with over the years,” said Dr. Vernino, Professor of Neurology, a Distinguished Teaching Professor, and a member of the Peter O’Donnell Jr. Brain Institute. “At UT Southwestern, we’ve been developing the approach to MSA care for a long while and have set the standards for how such a clinic can work.”
A team approach is key to the UTSW clinic’s success, he said.
“It’s all about coordinating care within the health care system and building a team,” Dr. Vernino said. “The clinic allows us to bring multiple specialists to the patient and to rely on each of our colleagues to take care of their piece.”
Before the UTSW clinic opened in 2015, MSA patients went to various offices across campus for treatment, seeing neurologists, urologists, dietitians, social workers, and primary care physicians. Now, when a patient comes to the clinic, all appointments can take place in the same location during a single afternoon.
“We see patients every four months,” Dr. Vernino said. “If we only saw them once a year, the disease has often progressed quite a lot. We settled on a time interval that allows us to monitor and adjust treatment.”
Research is an integral part of the patient experience at UT Southwestern, aimed at advancing therapies. One clinical trial currently underway is focused on treating the low blood pressure that some patients experience. Another ongoing trial is aimed at slowing down the disease by targeting the abnormal proteins that build up in brain cells. The clinic also facilitates research on improving understanding of the cause of MSA.
“People really want to be part of new trials dealing with treating the underlying disease pathology,” Dr. Vernino said. “We also do research for symptom treatment or new diagnostic tests.”
Patients also tell him their main goal is to have the highest quality of life even in the face of a progressive incurable disease. And that, Dr. Vernino said, “is what we’re aiming for.”
Disclosure: Dr. Vernino is on the scientific advisory board that developed criteria for the MSA Coalition’s new award and helped to review applications. Other experts also reviewed UTSW’s application.
FACTS ABOUT MSA:
- MSA is a rare and progressive neurodegenerative disorder that affects the autonomic nervous system, which is responsible for controlling body temperature, blood pressure, bowel and bladder function, and sexual function.
- Incurable, MSA is believed to be “sporadic,” meaning it has no known genetic or environmental cause.
- Because no specific blood tests or imaging studies distinguish the disease, diagnosis is difficult and must be made by a neurologist experienced with MSA.
- Patients usually show their first signs of the disease in their 50s or 60s, although there can be significant variability as to the age for MSA onset. Life expectancy is about eight years.
- Symptoms can include falling, difficulty walking, slurred speech, difficulty swallowing, dizziness, and depression. As the disease progresses, symptoms worsen.
- Treatment for various aspects of the disease includes physical, occupational, and speech therapies; drugs that raise blood pressure; treatment for bladder and bowel function; and CPAP devices to help ease breathing difficulties.
- The Multiple System Atrophy Research Fund, established by the MSA Coalition, has awarded $3.5 million to date to 55 MSA research progress grants at 34 institutions worldwide.
Source: The MSA Coalition