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Video Vignettes: Through Their Own Eyes: Heart Bypass Surgery

Video Vignettes: Through Their Own Eyes: Heart Bypass Surgery Our hearts start to beat at around a month and a half into pregnancy.1 We may take its constancy for granted until something goes wrong. Worldwide, cardiovascular disease is the leading cause of death with 17.7 million deaths each year.2 Coronary artery disease [...]

Video Vignettes: Through Their Own Eyes: Systemic Scleroderma

Video Vignettes: Through Their Own Eyes: Systemic Scleroderma Approximately 300,000 people in the US live with scleroderma; about 100,000 of those people live with a form called systemic scleroderma.1 Scleroderma is a connective tissue disorder involving the fibrous protein called collagen that is found in structures like cartilage, ligaments and tendons, throughout [...]

By |Sep 2017September 26th, 2017|Patient Stories|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 [...]

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. [...]

Video Vignettes: Through Their Own Lens: Neurofibromatosis

Video Vignettes: Through Their Own Lens: Neurofibromatosis Our “Through Your Own Lens” initiative invited members to share their personal stories through short videos. Patients have been describing their disease history, their feelings about their disease and thoughts about Inspire. Living with Neurofibromatosis Neurofibromatosis is a condition affecting the nervous system, causing tumors [...]

Video Vignettes: Through Your Own Lens – Living With Invisible Disease

Video Vignettes: Through Your Own Lens - Living With Invisible Disease Looking "well" is a common challenge among people who live with invisible illnesses and chronic disease.  Some call themselves “spoonies”: people who hear “but you don’t look sick” throughout their lives, while actually managing serious illness.  The term “spoonie” comes from [...]

Video Vignettes: Through Your Own Lens – Dealing With Side Effects

Video Vignettes: Through Your Own Lens - Dealing With Side Effects You wouldn’t think that someone could speak with delight about an experience with diarrhea. Yet when Amy,* a lung cancer patient, speaks about her search for help with “horrific diarrhea” in the video below, she sounds happy. Her relief at finding [...]