June 20, 2019
Michael Lauria knows only too well that lupus is not just a woman’s disease – he was diagnosed in the prime of his life – when he was just 32 years old. And he is counting on the Lupus Research Alliance to find the answers that will change his life.
Young, fit, and athletic, yet something was wrong. “I felt fatigued but I chalked it up to all the exercise I had been doing,” he said. “So I was completely taken off guard when I found out. And I was nervous. My only frame of reference was an aunt who had died from lupus complications.”
Michael suffers from chronic fatigue and inflammation, and his kidney function has to be very carefully monitored to see if he has developed lupus nephritis, which affects about half of people with lupus.
Supported by the lupus community, research funded by the Lupus Research Alliance is breaking through with discoveries in lupus causes, symptoms and complications.
Just recently, results of the first clinical trial sponsored by the Lupus Research Alliance and conducted through its Lupus Clinical Investigators Network (LuCIN) were reported. Entitled VAlidation in LUpus of an Electronic Patient Reported Outcomes Tool (VALUE), the study showed that a custom smartphone app effectively enabled lupus patients to report on their health-related quality of life, fatigue and other symptoms in real time rather than completing surveys during periodic visits to physicians’ offices.
A lupus nephritis study led by Vicki Rubin Kelley, PhD of Brigham and Women’s Hospital in Boston, Massachusetts and funded by the LRA, suggested that blocking the molecule interleukin-34 made by some cells in the kidney could reduce the amount of organ damage. Current grantees are also advancing lupus nephritis treatments. Erika Boesen, PhD at University of Nebraska Medical Center is testing if iron is a cause of lupus nephritis to help develop new treatments to protect kidney cells from dying. Jeremy Tilstra, MD, PhD at University of Pittsburgh is building on his previous discovery in lupus that some T cells in the kidneys appear to be exhausted and can no longer launch attacks. His current LRA-funded work will determine when T cells become exhausted and whether the kidneys modify the cells to stop them from attacking the organ.
Just recently, the National Institutes of Health program, Accelerating Medicines Partnership (AMP) published important studies focus on lupus nephritis. LRA is a sponsor of AMP.
Notes Michael, “After my diagnosis, I wanted to know all I could about lupus. I found the organization online, and I am fortunate that I did. Just look at the remarkable things they have done so far!”