The journey of a pulmonary fibrosis patient and a post-transplant patient have one big thing in common: We must take the correct dose of the proper medications at the appropriate time. So what happens when much of the pharmacy infrastructure fails on a random weekday? Medication management is…
Acute exacerbations, or sudden bouts of symptom worsening, increase the mortality risk after lung transplantation in people with interstitial lung diseases (ILDs), including idiopathic pulmonary fibrosis (IPF), a study reports. While a lung transplant is considered an effective treatment for ILDs, these findings “suggest that caution is required during decision-making,…
For many years, my relationship to the rare disease community was that I had stepsiblings with ataxia, a neurological condition without a cure or effective therapy. Little did I know I’d one day have my own rare disease. In January 2017, I was diagnosed with idiopathic pulmonary…
Sweden-based Vicore Pharma has granted exclusive rights to pharmaceutical company Nippon Shinyaku to develop and commercialize its treatment candidate C21 (VP01) in Japan, with an initial focus on idiopathic pulmonary fibrosis (IPF). Nippon will be operationally and financially responsible for the development of C21 in Japan, where…
I am regularly subjected to stories of trauma. Part of my role as a therapist is holding space for clients to disclose difficult situations and helping them to process distressing events in their lives. Thankfully, in my experience, it seems that a growing number of people are becoming comfortable with…
I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and subsequently received a bilateral lung transplant in July 2021. With IPF, whether you’re pre- or post-transplant, one of the things you learn quickly is that the growth of bacteria in the lungs can be deadly.
My mom, Holly, was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2018. An acute exacerbation booked her a one-way ticket to the intensive care unit for a four-month wait for new lungs. Less than one year after her diagnosis, she emerged from an operating room at the University…
Five new Pulmonary Fibrosis Foundation (PFF) scholars will each use $100,000, granted over the course of two years, to research new ways to diagnose, treat, or manage pulmonary fibrosis (PF). The six-year-old program awards grants each year to help scientists improve their understanding of PF, a chronic…
“I’m sorry” is a simple, two-word phrase I’ve used many times. For me, it can take two forms: It can be a statement of regret, or it can be a question. Because of my hearing loss, I use the latter to indicate that I need someone to repeat what was…
It has been two months since I last shared my thoughts in this column, and in that time, life has unfolded in ways I could never have anticipated. The lessons I’ve learned during this period have been profound, leading me to confront the blatant reality that life rarely adheres…
Get regular updates to your inbox.
