‘Story of hope’: Edmonton doctor shares story of recovery from rare autoimmune disease
Posted April 6, 2026 5:04 pm.
Last Updated April 6, 2026 6:25 pm.
Dr. Rob Agostinis never expected to go from treating patients to becoming one himself.
Four years ago, Dr. Agostinis was diagnosed with a rare autoimmune disease called anti-neurofascin syndrome. His antibodies attacked the junctions between nerves. At the time, he was only the 17th documented case in the world.
“I was paralyzed from the jaw down and couldn’t breathe,” Dr. Agostinis explained. “My immune system went bad on me and decided to attack the junctions between my nerves. So all of a sudden, there were junctions, and there was no transmission. I was paralyzed.”
Adding, “I couldn’t even feel my lower legs, and I was terrified.”
After months of intensive treatments, Dr. Agostinis was transferred to Edmonton’s Glenrose Rehabilitation Hospital. In this space, he started to make significant progress after using aqua therapy, which he describes as life-saving.
“I was on steroids, which made me swollen and then all of a sudden, it actually got rid of that. It got rid of that so much that the wedding band fell off my finger,” he explained.
Today, the recovery pool at the Glenrose Rehabilitation Hospital sits empty. It was closed in Nov. 2024 due to structural failure. The Glenrose Hospital Foundation is halfway to its $6.5 million goal to rebuild. Dr. Agostinis calls it a lifesaver.
“It brought me confidence. It was that moment. They put the wheelchair right up to the rails. I got up, went down the rails and once I was in the water I was right. I was fantastic,” Dr. Agostinis explained.
Dr. Agostinis wants to raise awareness of the rare disease that hit him out of nowhere. As he does so, he wants to help raise money for the Glenrose to rebuild its aqua therapy – so important in his miraculous recovery.
“I wanna tell people what is it like to being the way I was paralyzed and basically locked in syndrome, but also wanna tell people that there’s hope and there’s possibilities and the possibility to actually progress.”
