‘Constantly fighting your body’: Edmonton woman living with rare autoimmune disease hopes to raise awareness
Posted June 2, 2026 5:08 pm.
Last Updated June 2, 2026 9:48 pm.
For more than 15 years, Glenanne Ball has been living with a rare chronic autoimmune disease that attacks the protective coating covering the nerves.
When she was first diagnosed with CIDP, or chronic inflammatory demyelinating polyneuropathy, she suffered from numbness in her hands and feet and lost her ability to walk.
“I was sleeping almost 20 hours a day. It was horrible,” Ball recounted. “Had no energy, had no strength, because you’re constantly fighting your body to move.
“I couldn’t plug in my blow dryer. I couldn’t blow my own nose.”
Ball is sharing her story to raise awareness for her extremely rare condition while educating others about the disease and patient access to life-saving treatments.
“I saw a neurologist and did some tests and he told me I just needed to lose weight and do tai chi for exercise,” she said. “Well that didn’t help. That didn’t make it any better.”
Ball says it took a year to get an accurate diagnosis, which advocates say is all too common. Many doctors don’t know about the condition that is estimated to affect up to nine out of 100,000 people over time.
“I’ve had multiple emergency department visits when I’ve had a massive decline and I still have to continue to advocate in the ER,” said Donna Hartlen, the executive director of the GBS/CIDB Foundation of Canada. “Even if I have the information in hand, there’s a lot of lack of knowledge about the condition and what they need to do to treat them and who to call.”
While CIDP medications and treatments are covered in Alberta and across Canada, Hartlen says because early treatment is essential, they need to raise awareness.
“It takes many plasma donors to treat me for one month,” she said. “We need to make sure that we have enough supply to be available for access so patients can get better.”
For Ball, being able to access these treatments meant being able to walk, drive and enjoy life again.
“I golf, I do Zumba, I swim. I keep active,” she said.
