As I sat in my mom’s hospital room on the day of her long-awaited discharge, I felt like we were bringing home a very fragile adult baby. Her body had been through a series of assaults starting with an acute exacerbation of IPF and ending with a double-lung transplant.
The Transplant Caregiving Crash Course I Wish I’d Had
New preclinical data support MRG-229, an investigative next-generation treatment for idiopathic pulmonary fibrosis (IPF), as safe and effective, miRagen reported. “We believe this body of evidence supports further development of MRG-229 as a potentially differentiated approach for the treatment of IPF,” William S. Marshall, PhD, the company’s president and CEO, said in…
As I continue to recover from an acute health setback I wrote about earlier this month, I’ve been seeking ways to prioritize and improve my mental health. While I’m not completely alone, it has been tough to remain indoors and away from the many people I love, especially as…
Former New York Yankees center fielder and Latin Grammy nominee Bernie Williams is helping to raise awareness of idiopathic pulmonary fibrosis (IPF), the disease took his father’s life, as part of Boehringer Ingelheim’s national Breathless Ballad Challenge. The campaign aims to educate and empower people who have, or suspect…
Pulmonary fibrosis (PF) that results from inhaling silica dust is rebounding in wealthier counties after years of decline, due to a rising demand for artificial stone in home construction and renovation, a study from Spain reports. The study traces the disease in a group of people who worked with…
Low levels of a protein called esRAGE, present in the blood and lungs of people with idiopathic pulmonary fibrosis (IPF), are associated with a poorer prognosis and lower survival rates, a study shows. These findings suggest that esRAGE may be related…
There is a phenomenon in psychology known as “lost possible selves.” Possible selves are the heroes in our life story that we create within our inner narrative. They are made from goals and wants, fears and risks. They represent the infinite possibilities, expectations, and desires for our lives.
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…
I write a lot about the importance of person-first language and illuminating the identities that make me who I am. I often point out that my diagnosis of idiopathic pulmonary fibrosis (IPF) is just one part of me. In narrative therapy, we call these our preferred identities, a…
How idiopathic pulmonary fibrosis (IPF) patients assess their own symptoms and physical capacity predicts, to some degree, their risk of dying or of needing a lung transplant, according to a recent study. The study, “Associations Between Patient-Reported Outcomes and Death or Lung Transplant in Idiopathic Pulmonary…
