In November 2012, I began to experience shortness of breath. My throat and esophagus also felt somewhat cold, like I was breathing and exhaling cold air even when I was in the house. I didn’t think anything of it and didn’t attribute these symptoms to an illness. On a trip…
When I First Began to Process the Seriousness of My IPF Diagnosis
Lung cancer patients with underlying idiopathic pulmonary fibrosis (IPF) treated with proton radiation therapy live longer than those treated with X-ray irradiation, a study shows. Additionally, fewer occurrences of treatment-related lung complications were reported in proton therapy-treated patients. The study, “Preliminary result of definitive radiotherapy in patients with non-small cell…
Algernon Pharmaceuticals announced its plans to conduct a new in vivo animal study comparing its lead anti-fibrotic NP-251 compound with clinically relevant doses of both Esbriet (pirfenidone) and Ofev (nintedanib), two approved medicines for the treatment of idiopathic pulmonary fibrosis (IPF). IPF is a chronic lung disease characterized by a progressive and irreversible decline in…
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government officials is planned for April 10–12 in a Washington, D.C., suburb. Some 1,200 people have already registered to attend the World Orphan Drug Congress (WODC) USA 2019, set to take place at the Gaylord National Harbor…
The Pulmonary Fibrosis News Forums is celebrating its first birthday this month. As a forums moderator, I wrote information-focused columns ahead of the launch in early 2018 to give people an idea of what we hoped to achieve with this new initiative. I didn’t foresee how successful…
Poor sleep quality — assessed by full-night sleep evaluation and patient questionnaires — is linked to an overall reduced quality of life in individuals with idiopathic pulmonary fibrosis (IPF), according to a study. The study, “Quality of life in idiopathic pulmonary fibrosis: The impact of sleep disordered breathing,”…
Oral administration of omipalisib, an investigational inhibitor of PI3K and mTOR cellular signals, can reduce the activity of pro-fibrotic cells in the lungs of patients with idiopathic pulmonary fibrosis (IPF), results from a Phase 1 trial show. These findings support studies to further explore PI3K and mTOR signals as potential…
Since my diagnosis of idiopathic pulmonary fibrosis (IPF) nearly three years ago, I have changed in many fundamental ways. While my values and views and the activities I enjoy have stayed the same, my approach to life has been transformed since my diagnosis. I now try to…
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The March 4-5 meeting, to take place at the Hilton Am Stadtpark Vienna, features 27 speakers on a variety of disorders…
Many people are apprehensive about asking for help when faced with dire situations. Fortunately, I haven’t had to ask for help with my idiopathic pulmonary fibrosis (IPF) needs. Those in my circle have stepped up in the biggest ways possible and have been there for me when I needed their…
