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.
Mourning the Deaths That Can’t Be Counted
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…
Veracyte’s Envisia Genomic Classifier, the first commercially available genomic test to help diagnose idiopathic pulmonary fibrosis (IPF), can help physicians identify the disease in patients where other tests have been inconclusive, according to real-world data from a recent study. The study, “Employing Bronchoscopic Lung…
Galapagos and e-therapeutics are partnering to investigate mechanisms involved in idiopathic pulmonary fibrosis (IPF) and other fibrotic conditions and to select potential therapeutic candidates. The collaboration will combine Galapagos’ extensive knowledge on IPF and fibrosis with e-therapeutics’ Network-driven Drug Discovery (NDD) platform for examining disease mechanisms…
A Yiddish proverb states, “When a father gives to his son, both laugh; when a son gives to his father, both cry.” This is true when giving gifts of time, energy, and love, as in caregiving. A parent caring for a child is an act of…
Increasing the levels of a membrane-repair protein called tripartite motif containing 72 (TRIM72) protected against lung cell injury and lessened lung fibrosis in a mouse model of idiopathic pulmonary fibrosis (IPF). These data suggest that targeting TRIM72 or other membrane-repair molecules could be a treatment approach for IPF. The study,…
Many Pulmonary Fibrosis News readers know that during the last few months, I have had several acute illnesses. As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I ended up quite sick as a result. Since mid-November, I have been recovering from pneumonia, influenza A, strep…
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.
