Redefining Life as a Patient and Caregiver : Experts by Experience 2018

Redefining Life as a Patient and Caregiver : Experts by Experience 2018 Parenting and caring for a child with a medical condition challenges Erin Moriarty Wade. She writes, “I know that the patient experience begins long before you meet the doctor. I know that sometimes even parking your car can become a big part of that experience–especially when you have to park at a distance with a cranky toddler in a stroller, and a child hobbling in pain. I understand the fear that patients may feel, and I appreciate the role of the oft-forgotten caregiver.” Early [...]

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Apr 2019By |0 Comments

What We Can Learn From Patients’ Stories

What We Can Learn From Patients' Stories What is disease?  As bioethicist, Jackie Leach Scully wrote, “Most of us feel we have an intuitive grasp of the idea, reaching mentally to images or memories of colds, cancer or tuberculosis. But a look through any medical dictionary soon shows that articulating a satisfactory definition of disease is surprisingly difficult.” 1 Every day, people come to Inspire’s social communities with the goal of sharing their experience with disease. We believe that those living with disease define it in their stories. Communities of patients with cancers, autoimmune, chronic and rare [...]

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Feb 2018By |0 Comments

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis In patients who have pulmonary fibrosis, the moist, elastic lung tissue starts to thicken and scar making it increasingly difficult for blood to get oxygenated. As scarring builds up over time in this progressive disease, the amount of oxygen getting to the brain and other organs of the body significantly diminishes. Idiopathic pulmonary fibrosis is part of a larger group of illnesses called interstitial lung disease (ILD). Idiopathic pulmonary fibrosis (IPF) is a rare subset of this chronic disease.  Its cause is unknown, though it can run in [...]

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Aug 2017By |3 Comments

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis “Imagine being in a crowd and wishing you were invisible, but you’re marked, and there is nowhere you can hide.” Shanene Higgins wrote that in her essay “Marked: My scars remind me of my purpose,” part of Inspire’s 2017 Experts by Experience eBook. Higgins has sarcoidosis, an inflammatory disease that can cause rashes and sores on the skin. Part of Higgins’s experience was bullying: “There were many times when people would stop and stare at me as if I was a fish in a fishbowl…One afternoon while walking…I [...]

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Aug 2017By |1 Comment