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Painting the CIDP Patient Journey

Caroline, a CIDP patient, created a canvas of light and hope to capture the treatment phase.


This is third in a four-part video series about the patient journey.

Beginning treatment marks a milestone, especially for someone with a rare disease, which can be tough to diagnose.

Caroline, who has a rare neurological disorder called chronic inflammatory demyelinating polyneuropathy (CIDP), remembers feeling both tense and hopeful when she began treatment.

“I really felt like it was a bit of sunlight coming back in my life again,” she said.

Post-treatment, Caroline endured changes, too. Her family worries more about her than they once did. It’s a bit of the opposite problem with friends and family, who might assume she’s fine because her disability is a largely invisible one. CIDP causes inflammation of the nerves and can impact a person’s ability to move their arms and legs. 

Caroline was one of four CIDP patients who created paintings that represented different stages in their patient journey. She shared diagnosis, while other patients used art to express what it’s like to experience prediagnosis, diagnosis and living with CIDP. Many thanks to these patients who generously agreed to share their stories in this collaboration with the GBS/CIDP Foundation of Canada.