Pain to progress: An impactful history of lupus research and care at McMaster

At just age nine years old, Anne Matheson struggled more than any child should, facing a life-threatening fight with lupus. What could have been a time of playgrounds and popsicles slowly turned into frequent hospital visits, medical jargon, and frightening questions. Systemic lupus erythematosus, or lupus for short, is one of the most complex diseases to diagnose and treat due to its wide-ranging, often overlapping symptoms. It manifests itself in various ways, conforming to no pattern among patients—producing inflammation, pain, and fatigue among many other symptoms.

For over 40 years, McMaster University’s renowned medical experts and researchers have been working to better understand and treat lupus at The McMaster Lupus Clinic. Established in the 1980s, the clinic is housed within the Boris Clinic and is a joint initiative of the Faculty of Health Sciences of McMaster University and Hamilton Health Sciences. Judah Denburg, Kim Legault, Konstantinos Tselios, Derek Haaland, and Mark Matsos make up this interdisciplinary team, offering expertise in neurology, immunology, and rheumatology.

The disease of a thousand faces

The severity of symptoms and disease manifestations vary from person to person, even varying based on the age of onset, as Matsos, physician and associate professor in Medicine explains, “patients who are diagnosed earlier in life, are much more likely to have some severe disease manifestations, such as involvement of the kidneys.” Also known as “the disease of a thousand faces,” Matsos explains that it can take years for patients to get a diagnosis, as the disease often presents itself differently. “You could put a thousand lupus patients in a room and have them tell you their symptoms, look at their blood work, immunology, and it would be rare to find even one lupus patient who has the same experience as another,” he notes.

For patients living with lupus, sometimes the worst symptoms are not even clinically apparent. “You could walk next to someone with lupus who is having the worst disease, and you’d never recognize it, and the manifestations of that can be exceptionally impactful in their ability to function in life,” Matsos says.

When Judah Denburg, physician and immunologist, first started seeing patients he found “no one believed them” when they claimed to be struggling with their day-to-day lives. He began investigating the neuropsychological problems of lupus patients in the lab with colleagues Ramona Carbotte, Peter Temesvari and Susan Denburg in the 80s. Their findings showed that 50 per cent of these lupus patients, without ever having had a neurological or psychiatric event, had areas of cognitive impairment called “brain fog”. Judah Denburg states, “that is what I would like for people to appreciate about lupus patients. You might have a viral infection and feel really out of it for a few days. These people feel out of it for a long period of their entire life.”

Legacy of excellence

The Lupus Clinic has grown into a leading practice for lupus care, research, and education thanks to the dedication of its interdisciplinary team. With help from specialists in rheumatology, immunology, and hematology, a cross-collaborative approach is used for effective research and patient care. Matheson’s life-threatening battle with lupus as a child later inspired her to dedicate significant effort to lupus research and advocacy. She rose to become the president of Lupus Ontario, attending meetings, participating in television and radio segments, and raising awareness about the disease. In her honour, the Lupus Clinic has established its first Biobank—the Anne Matheson Biobank—which now houses over 400 patient samples for future research and prospective studies. By commemorating her legacy, the clinic underscores the meaningful connection between patient experiences and the ongoing scientific efforts to improve care.

Innovation in treatment and research

One of the clinic’s significant achievements is its involvement in the pioneering of treatments that specifically target the disease’s unique immunological pathways. The approval of Belimumab in 2010 marked a turning point, providing patients with a medication that helps to calm down an overactive immune system in conditions like lupus, reducing inflammation and symptoms. Since the 80s, the clinic has been at the forefront of testing new therapies, actively participating in clinical trials to provide patients with early access to cutting-edge treatments to change their lives.

Education and training for a cross-collaborative approach

Research is not the only objective of the clinic, as educating and fostering future generations of clinician-scientists are also cornerstones of its mission. The SLE Fellowship and The Geoff Carr Lupus Fellowship Program help to train the next generation of specialists, focusing on bridging the gap in knowledge translation from training to patient care. These fellowship programs offer rheumatologists comprehensive training in lupus care, ensuring they have the tools required to navigate this complex disease.

“We are now training our very first sub-specialist as a rheumatologist in lupus this year,” says Tselios, physician and fellowship program director. The fellow, from Sherbrooke, Quebec, aims to bring his findings back to his home region, demonstrating the program’s potential to expand lupus expertise across Canada.

Patient-centred care

A key step in achieving patient-centred care is acknowledging the complexity of the disease, along with its unknowns. Judah Denburg emphasizes this, “David Sackett, one of the founders of our medical school talked about the nominal bias—when we name something, we think we know it,” he says. “The criterion for lupus keeps changing, and they have changed multiple times throughout my career, so it is important to understand that because of the complexity of this disease, it requires numerous specialties.”

The clinic’s holistic approach addresses not only the physical symptoms of lupus, but also the cognitive and emotional challenges that patients often face. Legault, physician and associate professor in Rheumatology, emphasizes the importance of patient success in keeping the team motivated despite many challenges. “I think patient successes are what motivate you. Seeing people who have had the disease for years come back and report improvements is what really hits home.”

The future of lupus care

Looking ahead, the McMaster Lupus Clinic aims to continue its leadership in lupus research and care. The team envisions a future where personalized medicine allows for tailored treatments based on individual patients’ unique disease profiles.

“It is not enough to be educated. It is not enough to do clinical medicine. We must do some basic science, get into the lab, and do some research,” shares Judah Denburg. “We hope to mobilize basic scientists to work with the lupus biobank and analyze the tissues and the DNA.”

The clinic’s ongoing research will play a crucial role in achieving a tailored treatment plan for individual patient profiles. The team remains committed to enhancing education, advancing care, and ultimately, bringing patients hope for an improved quality of life.