When Susan Warso learned that her husband of 24 years, Howard Warso, had amyotrophic lateral sclerosis (ALS), her world as she knew it quickly began to crumble. Commonly referred to as Lou Gehrig’s disease, ALS hijacks a person’s ability to control muscle movement resulting in diminished limb mobility and difficulty speaking, swallowing, and eventually breathing. For Howard, who had “bulbar” onset ALS, which initiates in the mouth and throat muscles, these latter symptoms began almost immediately.
After seeking out physicians to treat her husband, Susan was referred to University of Chicago Medicine’s Raymond Roos, MD, the Marjorie and Robert E. Straus Professor of Neurology, who became, as she puts it, a true mensch.
“During Howard’s treatment, Dr. Roos provided a hands-on approach from day one,” said Susan. “There is no way we could have gotten the services or treatment that we needed had it not been for the tireless efforts of Dr. Roos and his team.
Above and beyond his clinical treatment of Howard, Dr. Roos became a personal advocate for the Warsos, including coordinating Howard’s care across different care providers, serving as a taskmaster in dealing with insurance companies to ensure medical and disability coverage, even doggedly pursuing an appeal after a denial of coverage. And to keep her abreast of the disease, Dr. Roos would send Susan emails on webinars that he thought she would find useful.
Despite the efforts of his medical team, Howard succumbed to the fatal disease just two years after his diagnosis, but the care and compassion of his doctor continued, said Susan. “We could have gone to a lot of places for his care,” said Susan. “But there was something about this place. We felt like it was family.”
Though his fight was over, Howard wanted to give future ALS patients a fighting chance, and so he donated his brain and nervous system tissue for medical research.
Howard was among the more than 5,600 people in the United States diagnosed with ALS each year, according to the ALS Association, and the average life expectancy of a person with the disease is just two to five years from diagnosis.
“Despite all that we have learned about ALS over the last 20 years, we only have one drug that makes a difference and is FDA-approved,” said Roos. “That drug helps to extend life by three months, but does not improve quality of life.
Roos admittedly was reluctant to pursue a career focused on ALS because at that time he didn’t think there was anything he could do for these patients.
“But in fact ones role as a physician is magnified because of the gravity of the situation with there not being a cure,” he said. As with Howard, many of Dr. Roos’s actions as a physician relate to end-of-life issues.
“Patients with ALS overwhelmingly are very courageous individuals and it turns out that my role has been inspired by interactions with patients and caregivers, and how they confront and deal with life-threatening situations.”
A cure may not yet be on the horizon, he noted, but genetics has opened a window into a number of new drug targets.
About three years ago, a gene mutation that is the most common one causing inherited ALS was discovered. Indeed, Howard Warso was found to have had this gene mutation. And while only five to ten percent of ALS cases are inherited, this group could offer traction to a better understanding of both inherited and noninherited types of ALS.
“There’s a lot of enormously exciting scientific breakthroughs and therapeutic possibilities that are on the scene,” he said. “I feel relatively certain that a clinical trial will happen in about a year that will have a greater impact than the one FDA-approved drug,” he said. “The hope is that we will have an impact on survival, quality of life, and annihilation of the disease.”
For Susan, who described Howard as kind, funny, and a loyal Jerry Garcia fan—demonstrated by his tie-dyed wardrobe—Dr. Roos’s efforts give her hope that others suffering from the disease may have a different outcome than her husband.
It was Howard, she said, who encouraged her to spread awareness of ALS. And that she has. For the past few years, Susan regularly participates in events to support and raise funds for ALS research.
“The disease brought us together as a family, and other family members and friends rallied around us in a big way during this journey,” she said.