Are you familiar with the website Healthgrades? The site allows patients to search for medical professionals and lets them rate their experience with a specific provider. The ratings, or grades, range from 1 to 5 stars. You can read about other patients’ experiences before making an appointment. When I…
I aspire to be a ‘5-star patient’ on my rare disease journey
Brainomix, a health software company, and drug developer Boehringer Ingelheim will advance testing of an artificial intelligence (AI)-based tool that may enable earlier diagnosis of progressive pulmonary fibrosis (PF). The two companies are collaborating to run studies of the Brainomix 360 e-Lung, a U.S. Food…
Note: This column describes the author’s own experiences with Ozempic (semaglutide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. As a person diagnosed with idiopathic pulmonary fibrosis (IPF) who received a bilateral lung transplant in July 2021,…
Insilico Medicine will soon launch an early clinical trial in China to test an inhaled version of its therapy candidate rentosertib in healthy volunteers and people with idiopathic pulmonary fibrosis (IPF). This announcement follows the clearance of the company’s investigational new drug (IND) application by the Chinese Center for…
A 24-hour news cycle, a lack of civil discourse, people who believe their needs are a priority, and the stress of a chronic, progressive disease with no cure: These things, and many more, contribute to the noise that fills my every waking hour. When I was diagnosed with…
My name is Kylene, and if you haven’t read my column before, my husband, Donnie, was diagnosed with pulmonary fibrosis in late 2022. Right now, it’s 5 a.m., and I’m writing from our hotel room. Twice a year, Donnie and I drive two and a half hours to Barnes-Jewish…
Enrollment has finished ahead of schedule in a Phase 2 clinical trial testing Calluna Pharma‘s experimental antibody therapy CAL101 in people with idiopathic pulmonary fibrosis (IPF). The Phase 2 study, dubbed AURORA (NCT06736990), was designed to enroll about 150 adults…
Have you ever woken up in a strange mood and, before your feet hit the floor, found yourself wondering what caused it? I recently experienced that; I was feeling melancholy, and the Dean Lewis song “How Do I Say Goodbye” came to mind. Someone I knew recently passed…
Abnormalities in DNA methylation — a type of genetic modification that can alter the activity of a gene without changing its sequence — may affect a person’s risk of developing idiopathic pulmonary fibrosis (IPF), according to a new study. The researchers say this work has uncovered “novel roles” for…
“How can I help you?” When was the last time you heard those five simple words? My next question may be even harder to answer: When was the last time you asked someone how you could help them? When I was diagnosed with idiopathic pulmonary fibrosis in January…
