The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.
Coalition Will Address Racial Disparities in Rare Disease Communities
People who have a history of a cough, accompanied by worsening shortness of breath and weight loss, should be assessed for idiopathic pulmonary fibrosis (IPF), a recent study suggests. This conclusion was based on an analysis of past patient records in the U.K., which sought to understand the pattern…
Survival chances for people with an acute exacerbation linked to idiopathic pulmonary fibrosis (IPF) are significantly worse than among those experiencing such flares with both IPF and emphysema, an examination of patients’ medical records found. The single-site study, “…
A drop in air pollution due to COVID-19 restrictions has eased overall symptoms for about one in every six people diagnosed with respiratory disorders, a British Lung Foundation (BLF) survey of more than 14,000 people in the U.K. revealed. These findings prompted the Taskforce for Lung Health — a coalition…
People with idiopathic pulmonary fibrosis (IPF) who undergo a bilateral lung transplant may have better postoperative lung function than those receiving single lung transplants, but long-term survival appears to be similar between the two procedures, a review study shows. While these findings may help guide clinicians’ decisions,…
Last week I wrote a column about energy expenditures and how I choose where to invest my energy in the multiple tasks vying for my attention. Unfortunately, since being diagnosed with idiopathic pulmonary fibrosis (IPF) four years ago, I just can’t give everything the energy I’d like. As a…
Idiopathic pulmonary fibrosis (IPF) patients taking antifibrotic therapies Ofev (nintedanib) or Esbriet (pirfenidone) had a mortality risk that was 37% lower than patients not treated with such therapies, a large registry-based study reports. The study, “Survival and Course of Lung Function in the Presence or Absence of Antifibrotic Treatment…
The Committee for Medicinal Products for Human Use (CHMP), an arm of the European Medicines Agency, has recommended the approval of Ofev (nintedanib) for the treatment of progressive fibrosing interstitial lung diseases (ILDs). This positive opinion follows Ofev’s approval for that same…
Low blood levels of haptoglobin-related protein (HRP), a protein with antioxidant properties, may serve as a biomarker of idiopathic pulmonary fibrosis (IPF), according to a recent study. The data also highlighted that IPF patients show significant changes in the levels of proteins involved in inflammatory and immune responses, as…
When I recall the times that loved ones were in the hospital for extended periods, I can still feel the energy of the waiting rooms. ICU waiting rooms have a particular hum about them, a palpable tension created by people in limbo, including those often too stressed to…
