Patient Stories

What I told researchers trying to find a cure for my rare disease

What I told researchers trying to find a cure for my rare disease By Seth Rotberg When I was about 12, I started noticing that something was wrong with my mom. She wobbled from poor balance, often tripping and falling over, as if she were drunk. She had severe mood swings; one [...]

Video Vignettes: Through Their Own Eyes: Rare Autoimmune Liver Diseases

Video Vignettes: Through Their Own Eyes: Rare Autoimmune Liver Diseases By Kathleen Hoffman, PhD, MSPH The liver has been called a forgiving organ because of its capacity to regenerate. However, chronic unrelenting damage over years can overwhelm its regenerative abilities, resulting in permanent scarring. Well-known risk factors-being overweight, alcohol abuse, viral infections [...]

Listen to People Impacted by Rare Disease

Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s [...]

Video Vignettes: Through Their Own Eyes: Thyroid Cancer

Video Vignettes: Through Their Own Eyes: Thyroid Cancer By Monica St. Claire Inspire asked its members if they would share their stories by video in a project called Through Their Own Eyes. Many did, and we have shared a number of these videos.(See links below)* Today, we share a video by a [...]

Video Vignettes: Through Their Own Eyes: Autoimmune Diseases

Video Vignettes: Through Their Own Eyes: Autoimmune Diseases The Autoimmune Diseases Support Community on Inspire created over 25,000 posts this past year. One of the over 21,000 members shared her experience with the community in a video. JTNDaWZyYW1lJTIwd2lkdGglM0QlMjI1NjAlMjIlMjBoZWlnaHQlM0QlMjIzMTUlMjIlMjBzcmMlM0QlMjJodHRwcyUzQSUyRiUyRnd3dy55b3V0dWJlLmNvbSUyRmVtYmVkJTJGUS1WSTcwQ1QzZlUlMjIlMjBmcmFtZWJvcmRlciUzRCUyMjAlMjIlMjBhbGxvdyUzRCUyMmF1dG9wbGF5JTNCJTIwZW5jcnlwdGVkLW1lZGlhJTIyJTIwYWxsb3dmdWxsc2NyZWVuJTNFJTNDJTJGaWZyYW1lJTNF According to the NIH, there are over 80 diseases caused by the immune system [...]

Lost Voice: Addressing healthcare inefficiencies through patient equality

Lost Voice: Addressing healthcare inefficiencies through patient equality After attending the Healthcare Information Management Systems Society (HIMSS ) 2018 in Las Vegas in March, Christina Farr, the CNBC reporter who covers health and technology, tweeted I have one observation post-HIMSS, now that i'm back in SF. There was an elephant in the [...]

Video Vignettes: Through Their Own Eyes: Ovarian Cancer

Video Vignettes: Through Their Own Eyes: Ovarian Cancer Members of the Ovarian Cancer Support Community on Inspire often refer to each other as “Teal Sisters*.” It's a term of solidarity and camaraderie as they face their condition together. Their posts reflect and express warmth, concern, understanding and an eagerness to help. Below [...]

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 [...]

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 [...]

Video Vignettes: Through Their Own Eyes: Living With Ostomy

Video Vignettes: Through Their Own Eyes: Living With Ostomy “The same thing could be said about guys who go to war, that unless you've been there you can't really understand what it is like and so your really best buddies are the ones that have been warriors like you…Those are the people [...]