As a patient living with idiopathic pulmonary fibrosis (IPF), it is inevitable that my dependency on others will increase as my disease worsens. This is something I have had to come to terms with since being diagnosed nearly two years ago. Since then, my independence has been threatened…
Why Doing Things for Others Feels Good as a Patient with PF
Results of a Phase 2 trial of Promedior’s PRM-151, a treatment candidate for idiopathic pulmonary fibrosis (IPF), show a slowing in the loss of lung function among treated patients. The research, “Effect of Recombinant Human Pentraxin 2 vs Placebo on Change in Forced Vital Capacity in…
Double lung transplants are linked to significantly higher survival rates than single lung transplants among pulmonary fibrosis patients younger than 70, a retrospective study shows. The study, “Single versus Double Lung Transplantation in Pulmonary Fibrosis: Impact of Age and Pulmonary Hypertension,” was published in the journal The…
Living with idiopathic pulmonary fibrosis (IPF) can be exceptionally difficult regardless of age. While a number of commonalities exist among people with various types of lung diseases, including IPF, there are also a number of differences that are unique to the age of the patient living with…
Canada’s healthcare system is excellent for people with common ailments like diabetes or high blood pressure, but it’s “basically failing the nearly three million Canadians with rare diseases.” So says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), a Toronto-based network representing 102 patient advocacy…
The progression of idiopathic pulmonary fibrosis (IPF) depends on the gender and smoking habits of patients, according to researchers. IPF-specific mortality was higher in female patients, whereas male patients were more likely to die from comorbidities associated with IPF. Female patients and non-smokers were less likely to succumb to pneumonia,…
I’ve been feeling vulnerable lately. I feel vulnerable having pulmonary fibrosis (PF), being disabled, using supplemental oxygen, and being ever-increasingly more dependent on others. What do I mean by vulnerable? Oxford English Dictionary defines “vulnerable” as “exposed to the possibility of being attacked or harmed, either physically…
A Rare Conditions Care Value (RCCV) program providing access to “second opinions” for patients with rare diseases like idiopathic pulmonary fibrosis (IPF) was recently launched by two U.S. health management companies, Express Scripts and Pinnacle Care. Second Opinion, as the service is called, offers precisely that— another opinion…
As a continuation of my “Gratitude Miniseries,” a monthly column highlighting the things I’ve enjoyed over the past four weeks, I am happy to report that May was a better month for me. As I shared in my previous column, April was tough, and although…
Supported by an educational research grant from Genentech, the France Foundation is launching a mentoring and relationship-building program for community healthcare providers to improve how patients with idiopathic pulmonary fibrosis (IPF) are diagnosed and treated. The program aims to bring front-line health practitioners into closer and long-term contact with…
