When it comes to rare diseases, one that definitely makes the list is spinal muscular atrophy with respiratory distress — SMARD, for short. Hunter Pageau, a 12-year-old boy from North Haven, Connecticut, is one of only 80 people in the world known to have SMARD, a motor neuron disease…
‘A Disease May Be Rare, Hope Should Never Be,’ Says Boy with SMARD at Connecticut Rare Disease Day Event
Working with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF) is difficult to manage, regardless of whether that work is full- or part-time. Exhaustion, illness, and hospitalizations often get in the way of being able to complete tasks efficiently, and may also prevent me from meeting organizational deadlines.
HGE Health of Philadelphia is partnering with the Temple Lung Center to offer a telemedicine disease management program for idiopathic pulmonary fibrosis (IPF) patients in the United States and elsewhere. The healthcare technology company already has a similar program for patients with chronic obstructive pulmonary disease, or COPD. The Temple Lung Center, part…
Dentists and other dental healthcare personnel could be at risk of developing idiopathic pulmonary fibrosis at work, the U.S. Centers for Disease Control and Prevention (CDC) reports. An article about the danger appeared in CDC’s Morbidity and Mortality Weekly Report. It was titled “Dental Personnel Treated for Idiopathic…
As a pulmonary fibrosis patient, I try to stay as active as possible. But as my disease has progressed, it has been harder and harder to travel. Just a few days ago, my husband and I traveled 400 miles to see my 94-year-old father whose health is failing.
In his 10 months on the job, Commissioner Scott Gottlieb of the U.S. Food and Drug Administration is earning praise for his efforts to make clinical trials for new therapies more flexible and responsive to the needs of rare disease patients. From cystic fibrosis to epidermolysis bullosa, the FDA…
It has been just over a month since the successful launch of the Pulmonary Fibrosis News Forums, and we have many of you to thank. The activity created on these new forums tells us that this type of website has been helpful for patients and that it can be…
Increasing the production of lipids in the lungs may help slow pulmonary fibrosis progression and potentially lead to new treatment options, a study suggests. The study, “Lipid Synthesis is Required to Resolve ER Stress and Limit Fibrotic Responses in the Lung,” was published in the American…
The Pulmonary Fibrosis Foundation (PFF) has named Pauline Bianchi, a veteran nurse and pharmaceutical industry expert, its vice president of research and development. Two of her roles will be overseeing the PFF Care Center Network and PFF Therapeutics Network, key elements of the organization’s strategy to improve care and…
If you have been reading my previous columns, you might recall that at the beginning of the new year, I decided to write a gratitude piece as each month in 2018 comes to a close. It is hard to believe this is the case for February already!…
