Edmonton Doctor Recovers from 17th Known Case of Rare Disease

Dr. Rob Agostinis went from treating patients to fighting for his life when his own immune system turned against him four years ago.

The Edmonton physician was diagnosed with anti-neurofascin syndrome, a rare autoimmune disease where antibodies attack the junctions between nerves. He became paralyzed from the jaw down and lost the ability to breathe on his own.

"I couldn't even feel my lower legs, and I was terrified," Dr. Agostinis said. At the time of his diagnosis, he was only the 17th documented case in the world.

After months of intensive treatment, Dr. Agostinis transferred to Edmonton's Glenrose Rehabilitation Hospital. That's where he discovered aqua therapy, the treatment he credits with transforming his recovery.

The moment he entered the pool changed everything. The water relieved the swelling from steroid treatments so much that his wedding band fell off his finger.

"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," he explained. The buoyancy gave him confidence and mobility he couldn't achieve on land.

Why This Inspires

Dr. Agostinis experienced what doctors call locked-in syndrome, where the mind stays alert but the body won't respond. Most people never escape that terrifying state.

His recovery proves that even the rarest conditions can improve with the right treatments and determination. He now uses his medical expertise and personal experience to give hope to others facing devastating diagnoses.

Today, Dr. Agostinis has returned to his life with a new mission. He's raising awareness about anti-neurofascin syndrome and supporting the Glenrose Hospital Foundation's campaign to rebuild the aqua therapy pool that closed in November 2024 due to structural failure.

The foundation is halfway to its $6.5 million goal. Dr. Agostinis calls the pool a lifesaver and wants other patients to have the same chance at recovery he received.

"I wanna tell people that there's hope and there's possibilities and the possibility to actually progress," he said.

His message is clear: even when your body stops working and you're one of only 17 people in the world with your condition, recovery remains possible.