As someone living with idiopathic pulmonary fibrosis (IPF), I have enjoyed connecting with others on a similar illness trajectory as me, as well as those living with different kinds of illnesses, including different forms of pulmonary fibrosis. We all have things in common, as well as things we…
A Week in the Life of an IPF Patient
Researchers identified a small group of genes that may promote idiopathic pulmonary fibrosis (IPF) after analyzing gene expression profiles in fibroblasts isolated from the lungs of patients with the disease. The study, “Global Gene Expression Analysis in an in vitro Fibroblast Model of Idiopathic Pulmonary Fibrosis Reveals Potential Role…
About six weeks ago, I shared that I am under consideration by the University of California, San Francisco (UCSF) for a lung transplant. A few weeks ago, I got the good news that UCSF said YES to allow me to start initial testing to…
Idiopathic pulmonary fibrosis (IPF) increases a person’s health and economic burden years before it is diagnosed, a multi-year Canadian study shows. The research, “Clinical and economic burden of idiopathic pulmonary fibrosis in Quebec, Canada,” appeared in the journal ClinicoEconomics and Outcomes Research. IPF is a progressive…
The “Spoon Theory” is a tool that you might find helpful when explaining your chronic illness and the limited energy it allows you for completing activities of daily living. The Spoon Theory uses spoons as a visual representation to quantify the energy. For example, you might start out…
Real-world data shows that treatment with Ofev (nintedanib, marketed by Boehringer Ingelheim) helps stabilize idiopathic pulmonary fibrosis (IPF) and is well-tolerated, a German study reports. The research, “Real-World Experience with Nintedanib in Patients with Idiopathic Pulmonary Fibrosis,” was published in the journal Respiration. Ofev and…
Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes that cause at least half of the 7,000 rare diseases currently known — was the focus of a discussion by three top New York geneticists. The Feb. 28 conference,…
IBIO-CFB03, an investigational fibrotic therapy, was selected as iBio’s lead candidate for further development, the company announced in a press release. The product may be a new treatment option for idiopathic pulmonary fibrosis (IPF) and scleroderma. Fibrosis is characterized by inflammation and buildup of collagen…
When it comes to rare diseases, one that definitely makes the list is spinal muscular atrophy with respiratory distress — SMARD, for short. Hunter Pageau, a 12-year-old boy from North Haven, Connecticut, is one of only 80 people in the world known to have SMARD, a motor neuron disease…
Working with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF) is difficult to manage, regardless of whether that work is full- or part-time. Exhaustion, illness, and hospitalizations often get in the way of being able to complete tasks efficiently, and may also prevent me from meeting organizational deadlines.
