I feel vulnerable writing about this topic, but if this column opens the door for conversation, my discomfort will be worth it. I recently had a conversation with one of my colleagues about having kids. She is healthy, but I am living with a terminal lung disease called idiopathic pulmonary…
Deciding Whether to Have Children When Chronic Illness Is a Factor
The Pulmonary Fibrosis Foundation (PFF) and Three Lakes Partners are joining forces in the fight against pulmonary fibrosis (PF), according to an announcement to mark National Pulmonary Fibrosis Awareness Month in September. Three Lakes Partners will provide funding to PFF to help the foundation reach its goals of…
My name is Michael Morale. As director of multichannel content for Bionews Services, my job is to bring engaging multimedia content to all of our rare disease communities. I would like to introduce some of the resources available to our Pulmonary Fibrosis News forum members, as well…
Before my mom had a double-lung transplant, my dad was her only caregiver. Holly, my mom, was reasonably independent until a couple of months before being admitted to the ICU. Ed, my dad, was her companion and helper, encouraging her to walk for exercise and helping her…
Processa Pharmaceuticals will explore and further develop the anti-fibrotic, anti-inflammatory compound HT-100 as a potential treatment for rare fibrotic-related diseases in adults, including focal segmental glomerulosclerosis, scleroderma, and idiopathic pulmonary fibrosis (IPF). The company announced that it has acquired the exclusive global rights to develop…
I often write about living with idiopathic pulmonary fibrosis (IPF) and what I’ve lost as a result of my diagnosis. It’s easy to write about because my life has changed drastically over the past three years. But I need to remember that the changes haven’t been all bad.
Immune cells can sense the mechanical forces at work in the lungs via a gate called PIEZO1, and deleting this gene in immune cells led to worse lung infections, researchers report. But its loss eased the inflammation associated with lung scarring in a mouse model of pulmonary fibrosis. Their study…
A protein called GDF15, which is secreted by a type of lung cells, is increased in the lungs and blood of people with idiopathic pulmonary fibrosis, a study shows. Supported by this finding, researchers believe that GDF15 may serve as a biomarker to help identify people who have…
Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest.  Two entries in November’s “Disorder: The Rare Disease Film Festival” will focus on what siblings go through, according to the San Francisco festival’s co-founder,…
On Independence Day, I found myself alone, drunk, and crying. Every other person at the small party had adjourned to the parking lot to smoke. I have always had a problem with smoking. The first fight my husband, Jonny, and I ever had was when I found out that he…
