In March 2019, my mom, Holly, got a second chance at life. Her bilateral lung transplant was a gift of the highest order. It saved and prolonged her life when nothing else would. It gave her body back the power to enjoy living. It restored her health and independence.
Adapting and Moving Through Tough Days
The degree of collagen degradation, a process called collagen turnover, evident in a person’s blood at the time idiopathic pulmonary fibrosis (IPF) is diagnosed predicts the severity of disease progression within one year, regardless of antifibrotic treatment, a study reported. These findings support the use of collagen turnover as a blood…
Many significant milestones in life occur during young adulthood. Some may buy their first home, get married, and start a family, which is a typical trajectory. Unfortunately, idiopathic pulmonary fibrosis (IPF), a progressive and fatal lung disease, doesn’t care about typical trajectories. It unapologetically interferes with the lives of patients…
Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…
Interstitial lung diseases (ILDs), particularly idiopathic pulmonary fibrosis (IPF), are associated with a substantial economic burden to healthcare systems due to the high cost of their treatments, a German study reported. Medication costs for IPF patients, recruited between November 2016 and April 2017 and followed for one year, rose from…
As a research sociologist, my goal is to research anything and everything I need answers to. I often become so preoccupied with this search that it becomes an obsession. Many people turn to online research for answers about health issues, and I am no different. When it comes…
The Three Lakes Foundation is joining with the Lung Foundation Australia, the Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF), and an Australian philanthropist to create a global network for pulmonary fibrosis (PF) research. Together, they aim to raise disease awareness, and the resources and knowledge…
A molecule thought to be a natural antioxidant, pterostilbene (PTE) prevented signs of idiopathic pulmonary fibrosis (IPF) from occurring in a cell model of the disorder by regulating a protein called ASIC2, a study reported. This finding suggests that PTE and other compounds targeting the ASIC2 protein may have…
For more than 40% of people with pulmonary fibrosis (PF), obtaining an accurate diagnosis takes a year or longer, according to a European survey. As noted by the international team of researchers who conducted the study, survey findings highlighted “a major need for more information and support during and…
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…
