As a person living with pulmonary fibrosis, it’s important to fully understand your disease. Take the time to learn about the condition and how it’s treated, so that you can play a proactive role in your treatment and get the most from your health care team. We’ve put together a list of six…
A hard truth about being diagnosed with a chronic illness is that there is usually a life expectancy to go with it. Often times, once a patient hears the diagnosis of their disease, there comes a desire to know ‘how long’ one can live with the disease and what…
It likely wouldn’t surprise anyone to hear that after being diagnosed with a life-threatening illness, there are many things about which a patient might feel differently. There also are changes both internally and externally that a patient will endure. These can be grander things, such as the way…
The National Heart, Lung, and Blood Institute of the National Institutes of Health (NIH) recently awarded a team of researchers at Weill Cornell Medicine a $2.1 million, four-year grant to study the mechanisms that cause scar tissue in the lungs and kidneys. The project aims to discover new molecular targets for the…
For patients diagnosed with pulmonary fibrosis (PF), coming face to face with the realities of the disease happens quickly. This is often due to the physical impact of PF and that over time, the patient’s abilities to do things they once could do will shift dramatically as their disease progresses.
The first research projects using data from the Pulmonary Fibrosis Foundation’s Patient Registry are under way, the foundation announced at an international conference in Nashville that bears its name. A record 895 people attended the Pulmonary Fibrosis Foundation Summit Nov. 9-11, where doctors and scientists discussed the latest developments in the field.
In my more recent columns, I have been writing about wrestling with end-stage pulmonary fibrosis and sharing my experience with seeking palliative care. As you can tell, I like planning ahead to take care of my own needs and the needs of my loved ones. My…
The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. A similar package before the Senate Finance Committee does not repeal the credit…
The Montefiore Einstein Center for Heart & Vascular Care has started a lung transplant program, joining an exclusive group of premier surgical programs in New York. Surgeons at the center will focus on people with conditions like pulmonary fibrosis, cystic fibrosis, emphysema and rheumatic diseases. The United Network for…
According to the Cystic Fibrosis Foundation, there are seven major airway clearance techniques (ACTs) for patients with lung disease. Airway clearance is needed to help clear away mucus from the lungs to help prevent infections and to improve lung function. Children will need an adult to assist with ACTs, and…
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