Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state today tests for all 35 disorders recommended under a federal screening panel, and even in those that come close, rare…
Chronic illnesses inevitably cause physical changes in a person’s body. These alterations include scars from surgery, procedures, and the placement of a medical device such as a port-a-cath or a peripherally-inserted central catheter, or PICC line. Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I’ve experienced many physical changes…
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage girls, and has the nation’s third-highest rate of uninsured residents — with 13.9% of all Oklahomans lacking health coverage. As if…
During the evaluation process for a lung transplant, the patient’s attention is drawn to a number of conditions. Most of these refer to the things you cannot do; you don’t hear much about what you can do. Being listed for a lung transplant is not a right, it’s a…
A new clinical model for terminal idiopathic pulmonary fibrosis (IPF) that allows patients to receive treatment at home has increased patient satisfaction, decreased hospital deaths, led to better symptom management, and lowered healthcare costs. Those outcomes of this new clinical model were published recently in the journal NEJM…
The Pulmonary Fibrosis Foundation (PFF) announced that its nationwide Care Center Network (CCN) now encompasses 68 medical centers in 33 states, following the addition of eight sites with recognized expertise in pulmonary fibrosis (PF) diagnosis, treatment,…
Following my diagnosis of idiopathic pulmonary fibrosis (IPF), I took some time to research the available information to learn about my disease. Despite discovering a lot of useful material from brochures, online sources, and support networks, I’ve found that connecting with other patients has helped me the most since my…
A patient with idiopathic pulmonary fibrosis (IPF), enrolled in the ZEPHYRUS Phase 3 clinical study, has been dosed with FibroGen’s investigational therapy pamrevlumab, the company announced. Still recruiting participants, the ZEPHYRUS study (NCT03955146) is expected to enroll approximately 565 IPF patients who have not responded to,…
The day after my mom, Holly, got on the transplant list, the doctor who had delivered the news said, “You’re at the top of the list. If we got lungs for you today, would you be ready?” It was scary to consider what stood between my mom and…
Increased activity of certain matrix metalloproteinases (MMPs), enzymes that regulate cell behavior, may explain the risk for developing aggressive pulmonary fibrosis in people with Hermansky-Pudlak syndrome (HPS), a rare genetic disorder, according to new research. The study highlights MMP-2 and MMP-9. The findings suggest that these unique…
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