Have you ever been so grateful to be part of a community, either in person or online, while at the same time desperately wishing that community didn’t have to exist? That is the vortex I am stuck in regarding all of the readers who follow my columns through…
As October comes to a close and pink ribbons (the universal sign for breast cancer awareness) start to disappear, it’s hard not to feel as though some diseases take priority when it comes to awareness campaigns. If you ask someone whether or not they know the colour of breast cancer…
Children’s National Health System no longer treats just kids. Its Rare Disease Institute, launched in April 2017, has partnered with the National Organization for Rare Disorders (NORD) to become the first of many U.S. “centers of excellence” to look after patients with rare diseases, regardless of age. The effort…
A compound called tubastatin inhibits an enzyme-linked cell signaling pathway associated with lung tissue scarring, reducing pulmonary fibrosis, a study reports. The research on the HDAC6 enzyme in laboratory cell cultures and mice was able to identify only part of the mechanism involved in alleviating the scarring, however. The full…
For a patient with a life-threatening illness, there is nothing more difficult than asking others to help you with a task that you were once able to do independently. Having to do this highlights the fact that as a chronic illness progresses, including pulmonary fibrosis (PF), a patient’s physical abilities often regress.
Inhibiting an enzyme called phosphoglycerate dehydrogenase prevented additional lung tissue scarring in a mouse model of pulmonary fibrosis, a study reports. The discovery means scientists might be able to develop a PF therapy by targeting the enzyme, which is involved in metabolism, or transforming food into energy. The enzyme is…
I had an experience last week that reminded me of how I am still adjusting to my changing energy levels. A friend stopped by to visit and we had a nice time catching up. She was here for an hour and a half, and I was sitting…
The U.S. Food and Drug Administration has granted Fast Track designation to PBI-4050, ProMetic Life Sciences’ potential treatment for idiopathic pulmonary fibrosis, or IPF. Regulators recently approved ProMetic’s Investigational New Drug application for PBI-4050 and the company’s design for pivotal Phase 2/3 clinical trials of the therapy. A pivotal…
If you’re a member of the PF community, you’re well aware of how little the general public knows about the disease. It’s important that we all work together to raise awareness. Awareness results in more fundraising efforts, which means more dollars, which means more research, and eventually, hopefully, that means…
With the exception of being on antibiotics again for a bacterial infection that tried to start in my ears, nose, and throat, I am feeling pretty well these days. I am tired, but that is to be expected, and most of my harder days now are from the…
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