Life with Arthritis: Kaleb Michaud, PhD, Shares His Story

SAN DIEGO—“I’m going to get personal,” said Kaleb Michaud, PhD, in the ARP Distinguished Lecture: From Then to Now to When—Perspectives from 45 Years of Patient Experience with Hope for Tomorrow on Monday, Nov. 13, at ACR Convergence 2023. Dr. Michaud proceeded to tell attendees his story—a patient perspective that he has never previously shared in his decades of ACR annual meeting attendance.

He explained why he’s never talked about his condition publicly, saying that when he presented his first poster presentation at the ACR annual meeting in San Diego in 2001, “I saw how some patients were treated differently. Whether it was obvious they had arthritis or not, they were relegated to a different population than the researchers.”

Dr. Michaud is a professor in the Division of Rheumatology and Immunology, University of Nebraska Medical Center, Omaha, and the director of FORWARD, The National Databank for Rheumatic Diseases. He has a doctorate in physics from Stanford University, Palo Alto, Calif., and has been a rheumatology researcher for 22 years. He also knows about rheumatic disease firsthand.

Dr. Kaleb Michaud

In 1977, when he was 3 years old, the young Kaleb had a limp and a swollen knee. Rheumatologist Frederick Wolfe, MD (1936–2023), diagnosed him with juvenile rheumatoid arthritis (JRA). Dr. Wolfe noted in the medical record that his young patient had been complaining of pain for a few months, but also wrote, “The child easily forgot the pain when the opportunity to play was given.”

Pain and social connections were recurring themes of Dr. Michaud’s lecture. So was the expectation of a short life. He was told he likely wouldn’t live past the age of 26.

He needed an escape from the pain, and he got a dog. “Knowing someone else depends on you, in this case a dog, makes a difference in outcome.”

The first pediatric rheumatologist he visited was in 1982 in Dallas, an eight-hour drive from his Kansas home. Pediatric rheumatologists were (and still are) few and far between. Illustrating how hard it can be to get a reliable diagnosis, Dr. Michaud said that at that time he was diagnosed with psoriatic arthritis, but that diagnosis did not follow him.

His arthritis was extensive and active. He talked about the painful surgery he underwent to straighten his feet so he could walk barefoot and go to the pool for the first time. He talked about having his toes and his wrists fused, and the pain he suffered simply shaking hands because of the position of the rod.