BUFFALO, NY (WKBW) — There is a first-of-its-kind medical study happening at the University at Buffalo. It will examine why some people develop a more severe case of Multiple Sclerosis than others.
According to the numbers, Western New York has some of the highest rates of MS in the country, with more than 2,500 with the disease.
“In Mary Jo’s final years of life they had to have a feeding tube to her and help her with all essential body needs,” recalled Larry Montani.
Montani, a Lewiston resident, reflected on the devastating effects MS had on his sister’s life.
Mary Jo Montani died from MS complications in 2019. She was among the five to ten percent of MS patients who experience severe symptoms.
“It was quite a devastating impact on her. She kept her cognitive abilities for the most part and we were fortunate for that,” Montani explained.
Montani tells me his sister lived at the Boston Home in Massachusetts.
It's a facility that helps care for severe cases and he brought the center to the attention of UB researcher Dr. Robert Zivadinov, neurologist.
“Nobody knows why these five to ten percent of MS patients really finish in so severe stage of this disease," Dr. Zivadinov stated.
“We do understand is it the brain — is it the gray matter or the white matter?” described Dr. Zivadinvo, pointing to MRI’s of the brain. “These people have been really neglected for too many years."
UB is now teaming with researchers in Boston to figure out why some people suffer more than others with this disease.
In the early stages, some MS patients can be treated through injections. But the UB researcher tells me for those in a “severe stage” there are no drugs.
“Usual tests in Multiple Sclerosis — clinical ones want you to move to walk — measure your walking ability — measure your cognitive ability and so with this study, we had to first invent how to even examine these people — in some standardized way,” Zivadinov explained.
The study is called Comprehensive Assessment of Severely Affected MS or CASA Home MS for short and will follow 60-patients at the Boston home and 60-Western New York patients.
“It’s critical that the study gets off the ground and anything that they can find out is very important,” remarked Rita Andolina of West Seneca.
67-year-old Andolina will be participating in the study. She was diagnosed with MS in her early 40s and was forced to retire as a social worker as the disease progressed.
“Within the last couple of years though, I’ve moved into a secondary progressive — for walking I need to use my cane for most areas,” Andolina replied. “You just take every day as it comes and that's the reason why many people have to give up their jobs — their careers — you just don't know how you're going to feel every day.”
The study is now underway with phase one to be completed by the summer, first learning what is the driver of the severity, then testing outcomes to understand that severity and to learn if researchers can predict which patients will have the most severe in the future.
The full study is expected to last up to seven years.
“MS is a very unpredictable disease,” Andolina noted.
But this study is a ray of hope for those who know about the disease firsthand.
“There is hope for better outcomes — if not for them — certainly for those who follow,” responded Montani.
“What would your message be, since you lived through this, to those suffering from it and to the family members that are caring for others?” Buckley asked.
“I can just offer hope and reinforce to all those who battle MS, that they're not alone and as challenging/daunting as it might be — never give up hope,” answered Montani.