It is inevitable that people living with a chronic illness will experience days that are difficult, both physically and mentally. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago, I’ve had many of these days. Fear of the future with this disease, physical limitations or restrictions because of failing…
Coping with Bad Days and Bad News: Having a Strategy Helps
Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how much harder it is for patients with rare diseases who must get to doctors’ appointments or clinical trials that are hundreds of miles away from home.
In preparation for my trip to Europe, I have intensified my fitness routine. My routine is already fairly grueling for a lung transplant patient. But in anticipation of extended walking periods, including hills and steps, I feel I have to up my workouts to two times a day, three to…
Pulmonary rehabilitation — a multidisciplinary intervention designed to manage the symptoms of different chronic lung diseases — may improve the exercise capacity and quality of life of patients with idiopathic pulmonary fibrosis (IPF) without generating any adverse events, a review study has found. The study, “Pulmonary…
Paragonix Technologies and the Lung Transplant Foundation (LTF) are expanding their collaboration to drive the development of several technologies aiming to improve donor lung preservation for transplant. These technologies include the Paragonix SherpaLung Preservation System, a special device designed to ensure lung preservation and viability during transport from…
Young adulthood is a life stage typically filled with new experiences, joy, and social celebrations with friends and loved ones. My closest friends and I fall into this category, which encompasses those ranging in age from their late teens through their 20s and early 30s. While young adulthood can…
Proliferation and inflammation of human lung fibroblasts is controlled by small RNA molecules called long non-coding RNAs, a study reports. The study, “Long intergenic non-coding RNAs regulate human lung fibroblast function: Implications for idiopathic pulmonary fibrosis,” was published in the journal Nature Scientific Reports. While the cause of…
The New York State Department of Health has authorized the use of Veracyte‘s Envisia Genomic Classifier, the first commercially available test to help distinguish idiopathic pulmonary fibrosis (IPF) from other interstitial lung diseases (ILD), without the need for risky surgery. Authorization takes effect immediately, making the Envisia…
A disease is considered rare in the United States when it affects fewer than 200,000 people (fewer than about 1 in 1,635 people), according to the Rare Diseases Act of 2002. The European Union considers a disease rare if it affects fewer than 1 in 2,000 people. Other…
Even before I received my official diagnosis of idiopathic pulmonary fibrosis (IPF), the thought of death consumed me. I had trouble sleeping. I would lie awake at night for several hours tossing and turning before finally falling asleep. The restlessness was a symptom of the IPF; the thoughts of…
