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

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 called neurofibromas to grow along nerves and under the skin. The two types are called neurofibromatosis type 1 or NF1 and neurofibromatosis type 2 or NF2. NF1 is the most common, occurring in 1 in 4,000 births while NF2 occurs 1 in 40,000 births.1 Caused [...]

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Aug 2017By |0 Comments

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 a blog post written in 2010 by Christine Miserandino called The Spoon Theory.1  In this post, Miserandino, who has lupus, described how she was able to help her best friend understand life with a chronic illness. To tell the story briefly: Holding 12 spoons, Christine [...]

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Jul 2017By |0 Comments