Video Vignettes: Through Their Own Eyes: Hepatitis C Virus Liver Disease

Video Vignettes: Through Their Own Eyes: Hepatitis C Virus Liver Disease October is Liver Awareness Month.  Today, Inspire is sharing information about the Hepatitis C virus and its impact on the liver. Roughly 3 to 4 million people in the US have the hepatitis C virus (HCV).1  Yet progression and outcomes vary.  Of 100 people who are infected by HCV, between 15 and 25 will be cured of the disease by their own immune systems.  Unfortunately, between 75 and 85 people will develop a chronic infection.  Scar tissue in the liver, called cirrhosis or stage IV liver fibrosis [...]

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Oct 2017By |0 Comments

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 the body.  People with  scleroderma make too much collagen and it builds up in tissues.  Often one of the first symptoms of scleroderma is hardening of the skin. The cause of scleroderma is unknown and there is no cure.  It can occur as a localized [...]

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Sep 2017By |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

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

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 answers that actually worked to stop this side effect is palpable. As she describes her experience, imagine yourself in her situation while undergoing treatment: experiencing unending GI urgency, or having such a severe scalp itch that it interrupts your ability to sleep and begins to [...]

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Jun 2017By |0 Comments

Why Storytelling Builds Brands

Why Storytelling Builds Brands At the Cancer Moonshot Summit in June 2016,  Vice President Joe Biden shared a story of something that many patients and caregivers have experienced.  During his son Beau Biden’s cancer treatment, Beau’s medical records needed to be transferred from one hospital to another a thousand miles away.  Because of the lack of interoperability of systems, the Vice President had to get on an airplane and fly the medical records to the other institutions.  It is striking that even someone with all the resources in the world had exactly the same problem as the [...]

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May 2017By |0 Comments

Rare Disease and Social Media: Making Connections

Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases.  Now, on social media, they are writing about it, sharing the desperation and the hurt.  And they are finding each other in the process. Joy Aldrich kept her diagnosis of Charcot-Marie-Tooth a secret from everyone (including her physician) for 33 years.1  Dawn Nellor, a patient with pulmonary sarcoidosis, describes one reason for this, “The behavior of past appointments with physicians…have numbed me to their raised eyebrows and [...]

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Apr 2017By |0 Comments