The day you’re diagnosed with a chronic illness is generally a day you won’t forget. The words from my doctor, Steven Nathan, made sense in the moment. They also became a collection of sound bites. They fall into three distinct categories: 1) you have, 2) you can expect, and…
How I’ve Prepared Myself for the End of Life
A total of 30 patient advocacy groups working to further understanding and the needs of people living with rare diseases have been selected to receive a Horizon Therapeutics‘ #RAREis Global Advocate Grant. Winners of this year’s inaugural awards are spread across nine countries and represent a total of 29 rare…
A strong relationship with a medical specialist can make a world of difference. As a young adult living with idiopathic pulmonary fibrosis (IPF), a debilitating and life-threatening lung disease, I have various specialists, but the one I value most is my pulmonologist. Before my diagnosis in 2016, I bounced…
Indulge me for one minute and think of some of the firsts you’ve experienced. What comes to mind? Is it the first time you tied your shoes? The first time you held your firstborn? The first time you drove a stick shift? If you flawlessly executed that last…
The U.S. Food and Drug Administration (FDA) has given fast-track designation to DWN12088, an experimental anti-fibrotic medication that Daewoong Pharmaceutical is developing to treat idiopathic pulmonary fibrosis (IPF). Fast track designation is given to therapies that are intended to treat serious conditions and fill an unmet medical need.
Most idiopathic pulmonary fibrosis (IPF) patients treated with NP-120 (ifenprodil) in a 12-week clinical trial saw their lung function improve or stabilize, and most also experienced an easing in coughing, according to top-line data announced by the therapy’s developer, Algernon Pharmaceuticals. “Simply put, the IPF data is better than we…
Did you ever play Pac-Man? The bright yellow Pac-Man would wander through the maze, happily munching down the blinking dots. That’s how I feel about my energy levels as a pulmonary fibrosis advocate. I pursue advocacy with a passion fed by all the opportunities that arise — my own…
It’s been awhile since I’ve really felt defeated, but life has a way of reminding us sometimes of how truly vulnerable we are. Dealing with a rare illness like pulmonary fibrosis can complicate things even more. The last two months have been tough for my family and me. We’ve…
Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I knew the disease would diminish my quality of life. For about three years, my IPF progression stair-stepped — that is, I’d remain stable for a period, and then I’d experience a decline in lung function and…
The Pulmonary Fibrosis Foundation (PFF) is hosting its sixth annual PFF Walk fundraiser with virtual and in-person events over the next few months to raise funds and awareness in support of people living with pulmonary fibrosis. “We encourage everyone to join us in celebrating these individuals and helping…
