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 minute she was fine and the next, she was angry, frustrated, or depressed. Multiple physicians’ visits resulted in a diagnosis of bipolar disorder and major depression, but our family knew there was something else going on. Lacking an adequate diagnosis, my mother was becoming a [...]

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Jan 2019By |0 Comments

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 like Hepatits-C--make cirrhosis of the liver the seventh leading cause of death in the US, affecting an estimated 1 in 400 adults. 1 Yet, a small number of cirrhosis cases are caused by three rare autoimmune diseases,  autoimmune hepatitis (AIH), primary biliary cholangitis (PBC) and [...]

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Jan 2019By |1 Comment

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 position paper from 2017 clearly describes the dilemma faced in rare disease research. Lab measures and organ size don’t speak to what patients with rare diseases experience, need or value. This focus on measures that are not meaningful impacts the development of rare disease treatments [...]

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Oct 2018By |0 Comments

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 member of the ThyCa: Thyroid Cancer Survivors Association  Thyroid Cancer Connect Support Community on Inspire who, together with other members, wrote a book, After the Diagnosis: Medullary Thyroid Cancer. Thyroid cancer is a rare cancer.  The American Cancer Society estimates in 2018 there will [...]

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Jun 2018By |0 Comments

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 attacking the body.1 Some of the more common include type 1 diabetes, lupus, inflammatory bowel diseases, celiac disease, psoriasis, multiple sclerosis and rheumatoid arthritis. Symptoms that first appear - like fever, fatigue and muscle aches - describe a number of ailments. Getting a diagnosis can [...]

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May 2018By |0 Comments

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 room, so I'll just say it. We'll all be patients and/or caregivers someday. So are we going to fix health care now, while we can, or continue to make $ through the current inefficiencies? — Christina Farr (@chrissyfarr) March 8, 2018 Defining patients Farr’s tweet [...]

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Apr 2018By |0 Comments

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 we share a video by a Teal Sister describing her experience with ovarian cancer and the Ovarian Cancer Support Community on Inspire. Getting advice The best advice comes from people who have been through the experience before.  Members of this community are open [...]

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Mar 2018By |0 Comments

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 (CAD), the most common heart disease in the US, is caused by a buildup of plaque in the arteries supplying blood to the heart. These arteries narrow and blood flow to the muscle of the heart is blocked. Heart or chest pain, called angina, and [...]

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Feb 2018By |0 Comments

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 definition of disease is surprisingly difficult.” 1 Every day, people come to Inspire’s social communities with the goal of sharing their experience with disease. We believe that those living with disease define it in their stories. Communities of patients with cancers, autoimmune, chronic and rare [...]

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Feb 2018By |0 Comments

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 you can really relate to the best, even more so than your own family.”  ~member of the Ostomy Support Community on Inspire. People who have been through the operation that removes all or portions of their colons, ileums or bladders must live with and adapt [...]

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Dec 2017By |0 Comments