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Living with Idiopathic Pulmonary Fibrosis

Being diagnosed with IPF, as with many other rare diseases, can feel both overwhelming and bewildering. For many, the first time they’ve heard about the condition is when they get a diagnosis. IPF results in irreparable scarring of the lungs, which progressively worsens lung function. It’s terminal, and there is no cure. But there is some promising research underway… Why are so few people, including doctors, aware of IPF? Well, it’s a rare disease. I think my doctor had seen maybe one or two other people with it in his whole career. So when I got my diagnosis, there just weren’t many resources out there to find out more. And that’s one of the reasons we started PF Warriors.

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Articles of Interest

Breathing New Life Into Lung Disease Awareness

Robert O'Rourke has idiopathic pulmonary fibrosis, and he wants the world to know about it. It bothers him that a disease that kills tens of thousands of people each year in this country is largely unknown, so he's using his public relations background to try to put IPF on the map.

Campaign launched to raise profile of idiopathic pulmonary fibrosis disease

Maher believes IPF has failed to receive more attention in the past because lung diseases are associated with smoking and, until recently, the prognosis for IPF sufferers was seen as hopeless. The cause of IPF is unknown, although it is more common in smokers and in people exposed to dust from wood, metal, textile or stone. Maher said greater awareness among clinicians and drug advances offered "a glimmer of hope".

I.P.F., Not Aging, Could Be Causing Breathlessness

On average, it takes patients with I.P.F. two years to be diagnosed correctly. People often attribute their breathlessness to lack of fitness or advancing age because I.P.F. is typically a disease of older people.

Idiopathic pulmonary fibrosis

Substantial progress has been made in the understanding of the clinical management of IPF, with the availability of two pharmacotherapeutic agents, pirfenidone and nintedanib, that decrease physiological progression and likely improve progression-free survival. Current efforts are directed at identifying IPF early, potentially relying on combinations of biomarkers that include circulating factors, demographics and imaging data.

Idiopathic Pulmonary Fibrosis on the Internet. Let’s Calm the Sea of (Mis)information

Although we recognize that not everything you read on the Internet is true and accurate, it is disheartening to learn how many websites house misinformation on IPF.

Living With The Terminal Lung Condition You’ve Never Heard Of

We can make real progress in finding treatments for IPF but more people need to be aware of it to hopefully donate to research.

New Treatments for Deadly Idiopathic Pulmonary Fibrosis

Recently approved drugs and new therapies are helping people keep lungs functioning longer. The disease has no known cause, setting it apart from related pulmonary diseases where doctors can identify specific irritants or exposures to toxins such as asbestos. Its symptoms—shortness of breath and persistent cough—resemble diseases like asthma and emphysema, often leading to missed or delayed diagnoses.

What Is Idiopathic Pulmonary Fibrosis?

Your risk for IPF is higher if you smoke or have a family history of IPF, and the risk increases with age. The most common symptoms of IPF are shortness of breath and cough. Some people may not have symptoms at first, but symptoms can develop and get worse as the disease progresses.

Resources

PF Warriors

PF Warriors is an international support network that provides support, education, inspiration, and hope to individuals and families affected by pulmonary fibrosis. Membership is free.

Pulmonary Fibrosis MD

Pulmonary Fibrosis MD is an educational resource for patients, caregivers, friends, and family members interested in learning about Idiopathic Pulmonary Fibrosis or IPF.

Lungs & You

Here at Lungs&You®, you can find information about pulmonary fibrosis, idiopathic pulmonary fibrosis (IPF), and interstitial lung disease (ILD). ILD can be a serious condition that may cause scarring of the lungs. When ILD causes scarring of lungs, it’s often referred to as pulmonary fibrosis. There are many different types of ILD—some with known causes and some with unknown causes. IPF is one of the most common types of ILD and has an unknown cause.

NORD

Idiopathic pulmonary fibrosis (IPF) is a chronic lung disorder characterized by thickening, stiffening and scarring (fibrosis) of tissue within the lungs. Affected individuals develop shortness of breath and progressive lung disease. Ultimately, IPF results in life-threatening complications such as respiratory failure. The rate of progression can vary greatly from one person to another.

StatPearls

Idiopathic pulmonary fibrosis (IPF) is a progressive lung disorder characterized by scarring of the lungs from an unknown cause. The condition has a poor long-term prognosis. Classic features of IPF include the gradual onset of shortness of breath, progressive dyspnea, and a dry, nonproductive cough. Pulmonary function tests usually reveal restrictive lung function impairment, decreased functional vital capacity, and diminished carbon monoxide diffusing capacity. Early diagnosis is pivotal for effective management, given the disease's tendency to progress rapidly in advanced stages.