[Sheila Curran]

My father died almost 20 years ago from pulmonary fibrosis. At that time there were no treatments, but he told the whole family that there may be a genetic component. When my identifical twin sister was diagnosed with IPF in 2017, I got tested. Luckily my twin told me that in the early, asymptomatic stages IPF often doesn’t show up on an xray. That was true for me, but I pushed to get a CT scan and was told something was going on in my lungs which couldn’t be definitively diagnosed as IPF, but which Brigham and Womens Hospital in Boston would check every year along with pulmonary function tests. In 2022 I received the IPF diagnosis and went on OFEV (reduced to 100 2x a day due to high blood pressure side effects). Since 2022 I have experienced very little pulmonary decline. One of the leading experts in IPF told me that as many as 30% of first degree relatives of someone with IPF will have it/get it. Early diagnosis is key, and I’m hoping anyone with a familial connection will start getting tested at age 50. It makes a huge difference to your ability to manage the condition through exercise and diet (as well as your mood) if you start taking action before you’re out of breath. Can’t say enough good things about the Brigham, particularly Dr. Goldberg (my pulmonologist) and Dr. Hunninghake who does excellent research in this area.