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 [...]

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 [...]

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 [...]

Humanizing The Brand Experience: Five Ways to Optimize Your Patient-Centric Strategy with Social Media

Humanizing The Brand Experience: Five Ways to Optimize Your Patient-Centric Strategy with Social Media Today, over 65% of American adults are using social media sites, and adoption from seniors (65 and older) has grown from 0% in 2006 to 35% in 2015. This digital transcendence has had profound implications for healthcare and medicine, which is now the leading factor that is enabling the entire healthcare ecosystem to pivot around the patient-centric model. The one-size-fits-all wonder drug and the physician-voice-driven model, as we know it, is rapidly undergoing a paradigm shift towards advanced biologics (i.e., cell-based immunotherapies) and [...]