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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]