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Feb. 29 is Rare Disease Day. Pulmonary fibrosis is one of the more than 6,000 known rare diseases. While PF may not have much in common with other diseases, those with PF share a connection with the one in 20 people worldwide who will live with a rare disease…

Rare Disease Day takes place on Feb. 29. Bionews Services, the parent company of this website, has taken on this initiative in an all-out effort to bring awareness to rare diseases, of which over 6,000 have been identified. I often ask myself, “What will you do to bring…

I believe we all have an innate desire to feel connected with one another. It doesn’t matter whether that connection is when we’re empathizing with another patient plagued by the same disease, or when the anguish we experience matches that of a patient who is also a friend. One of…

As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I remember how naive I was about…

Much of my young adult life was molded by my fears. I have talked about the effects in past columns, and how my mom’s hospitalization helped me find my courage. After surviving months in the ICU, a double-lung transplant, and a rocky start to her recovery, my mom is…

When thinking of chronic lung conditions, you may visualize the use of supplemental oxygen or a person struggling with physically demanding tasks, such as walking up a flight of stairs. People living with idiopathic pulmonary fibrosis (IPF) often struggle with daily tasks. As our disease progresses, our ability to exchange oxygen…

When my mom, Holly, had an acute exacerbation of her idiopathic pulmonary fibrosis, she was transported to the University of California, San Francisco (UCSF) Medical Center. She spent the first three weeks in the intensive care unit recovering enough to get on the lung transplant list. When at last…

After a lung transplant, a patient should not partake in some tasks or continue with certain behaviors. For example, I used to love to do yardwork, such as gardening and keeping my lawn in shape. But my transplant doctor recommended against it. I can’t do other activities as well, but…

Idiopathic pulmonary fibrosis (IPF) is a cruel disease. Characterized by progressive scarring in the lungs that prevents oxygenation, IPF slowly steals a patient’s ability to breathe. There is no cure for IPF, and the only approved medications to slow the development of lung fibrosis are Ofev (nintedanib) and Esbriet…

Have you ever had to persuade yourself to do something? I often negotiate with myself to complete tasks I don’t want to do by rewarding myself with something enjoyable afterward. That worked when I was in school and cramming for exams: If I just get through this last chapter, I…