This is fourth in a four-part video series about the patient journey.
After almost a decade, Rosemarie knows the day-in, day-out routine of managing the rare neurological disorder called chronic inflammatory demyelinating polyneuropathy (CIDP).
To create an image that signified the management stage, Caroline painted her feeling that she is “tethered” to the disease, which causes inflammation of the nerves and can impact a person’s ability to move their arms and legs.
But she also can map her energy levels and reserve those energetic times for travel and other important activities, she said. Rosemarie also has wisdom to pass along to other patients, especially those recently diagnosed. For one, keep a daily journal of symptoms and how you’re feeling to share with your doctor and healthcare team.
“Pay attention to your body and to your symptoms,” Rosemarie said.
Rosemarie was one of four CIDP patients who created paintings that represented different stages in their patient journey. She shared management, while other patients used art to express what it’s like to experience prediagnosis, diagnosis and treatment. Many thanks to these patients who generously agreed to share their stories in this collaboration with the GBS/CIDP Foundation of Canada.
