Living with CIDP: one Edmonton woman's 15-year battle with a rare disease
Glenanne Ball spent years misdiagnosed before learning she had a nerve condition affecting 1 in 10,000 people. Now she's fighting to raise awareness.
For more than 15 years, Glenanne Ball has been locked in a daily fight with her own nervous system.
When she was first diagnosed with CIDP — chronic inflammatory demyelinating polyneuropathy — her body turned against her. The condition attacks the protective coating covering nerves. She lost feeling in her hands and feet. She lost the ability to walk. She was sleeping almost 20 hours a day.
"I was constantly fighting your body to move," Ball recounted. "I couldn't plug in my blow dryer. I couldn't blow my own nose."
But the diagnosis didn't come quickly. Ball saw a neurologist who told her to lose weight and do tai chi. It didn't help. It took a year to get an accurate diagnosis — a delay that experts say is all too common for CIDP, which affects an estimated nine out of 100,000 people.
Many doctors simply don't know about the condition. Donna Hartlan, executive director of the GBS/CIDP Foundation of Canada, said she's had multiple emergency department visits where staff didn't understand her illness. "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," Hartlan said.
Once Ball finally got access to the right treatment — medications and plasma-based therapies covered in Alberta and across Canada — her life changed. The treatments work. She needed them to work.
"It takes many plasma donors to treat me for one month," Hartlan said. "We need to make sure that we have enough supply to be available for access so patients can get better."
Early treatment is critical. That's why Hartlan and Ball are speaking out now, pushing for awareness among doctors and the public alike.
Today, Ball golfs. She does Zumba. She swims. She keeps active. The daily fight continues — but now she's winning.
For most people, CIDP is invisible. There's no obvious marker of the battle happening inside. Ball's visibility matters because it forces the question: how many other Edmontonians are fighting diagnoses that doctors don't yet recognize?