Using the Spoon Theory to Describe My Experience with IPF

The “Spoon Theory” is a tool that you might find helpful when explaining your chronic illness and the limited energy it allows you for completing activities of daily living. The Spoon Theory uses spoons as a visual representation to quantify the energy. For example, you might start out…

Real-world data shows that treatment with Ofev (nintedanib, marketed by Boehringer Ingelheim) helps stabilize idiopathic pulmonary fibrosis (IPF) and is well-tolerated, a German study reports. The research, “Real-World Experience with Nintedanib in Patients with Idiopathic Pulmonary Fibrosis,” was published in the journal Respiration. Ofev and…

Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes that cause at least half of the 7,000 rare diseases currently known — was the focus of a discussion by three top New York geneticists. The Feb. 28 conference,…

IBIO-CFB03, an investigational fibrotic therapy, was selected as iBio’s lead candidate for further development, the company announced in a press release. The product may be a new treatment option for idiopathic pulmonary fibrosis (IPF) and scleroderma. Fibrosis is characterized by inflammation and buildup of collagen…

When it comes to rare diseases, one that definitely makes the list is spinal muscular atrophy with respiratory distress — SMARD,  for short. Hunter Pageau, a 12-year-old boy from North Haven, Connecticut, is one of only 80 people in the world known to have SMARD, a motor neuron disease…

Working with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF) is difficult to manage, regardless of whether that work is full- or part-time. Exhaustion, illness, and hospitalizations often get in the way of being able to complete tasks efficiently, and may also prevent me from meeting organizational deadlines.

HGE Health of Philadelphia is partnering with the Temple Lung Center to offer a telemedicine disease management program for idiopathic pulmonary fibrosis (IPF) patients in the United States and elsewhere. The healthcare technology company already has a similar program for patients with chronic obstructive pulmonary disease, or COPD. The Temple Lung Center, part…

Dentists and other dental healthcare personnel could be at risk of developing idiopathic pulmonary fibrosis at work, the U.S. Centers for Disease Control and Prevention (CDC) reports. An article about the danger appeared in CDC’s Morbidity and Mortality Weekly Report. It was titled “Dental Personnel Treated for Idiopathic…

As a pulmonary fibrosis patient, I try to stay as active as possible. But as my disease has progressed, it has been harder and harder to travel. Just a few days ago, my husband and I traveled 400 miles to see my 94-year-old father whose health is failing.

In his 10 months on the job, Commissioner Scott Gottlieb of the U.S. Food and Drug Administration is earning praise for his efforts to make clinical trials for new therapies more flexible and responsive to the needs of rare disease patients. From cystic fibrosis to epidermolysis bullosa, the FDA…