Hope For IPF
Article: Pulmonary Fibrosis Foundation
Share this article!
Leading PF Research, Awareness, Advocacy, And Support.
There is no cure... but there is hope. Idiopathic Pulmonary Fibrosis or IPF, affects about 200-thousand people. Dr. Daniel M. Rose, President and C-E-O of the Pulmonary Fibrosis Foundation, and IPF patient, news anchor Ralph Howard and his wife, Broadway actress and comedienne Julie Halston join us to discuss this mysterious disease. Learn what you can do to spread the word and increase education about this terminal disease. Patients don't have to go it alone!
Hope For IPF
Did you know that rare diseases affect 1 in 10 Americans?
One of them, called idiopathic pulmonary fibrosis (IPF) affects approximately 200,000 Americans.
Although there is no cure to date, there is hope. The Pulmonary Fibrosis Foundation is:
? The largest international organization working to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families.
? Assisting the PF community and has expanded their reach internationally, communicating with the medical community and patients around the world.
? An 'honest broker' for the PF community providing support and unbiased information through peer-reviewed grants, medical and patient education, and initiatives such as a National PF Patient Registry.
? The host of the biennial international scientific conference, PFF Summit: From Bench to Bedside
? Spreading awareness and raising funds through signature events such as the third annual Broadway Belts for PFF! scheduled for February 25, 2013. Past special guests have included Liza Minnelli and Joel Grey; the evening is hosted by Broadway actress Julie Halston.
IPF is the result of the development of excess scar tissue in the lungs. The median age at the time of diagnosis is approximately 63 years old, but it can also affect young adults as well as older people.
The ground-breaking mini-series, "Behind the Mystery: Rare and Genetic Diseases" from the creators of The Balancing Act® launched November 19th on Lifetime TV. The goal of the series is to raise awareness of rare conditions like IPF while helping to inspire Americans to take a more active role in advocating for their health.
Watch the segment on IPF on December 17th at 7 am ET/PT on The Balancing Act® Lifetime TV.
For more information, and to reach the Toll Free Hotline please visit: www.pulmonaryfibrosis.org
There is a lack of newly published data to demonstrate an accurate estimate for the incidence of idiopathic pulmonary fibrosis (IPF) in the United States. The most recent estimates indicate that approximately 128,000 Americans have IPF (2), although there are published estimates that suggest the number may be as high as 200,000 (9). Varying terminology and lack of standard diagnostic criteria have complicated the accrual of accurate data.
More importantly, it is anticipated that the number of individuals diagnosed with IPF will continue to increase. This will be a result of people living longer, and an improved clinical understanding of IPF which will lead to earlier and more accurate diagnosis.
The lack of clinical understanding of IPF remains a concern in the medical community. Limited awareness of the epidemiology (causes) and pathogenesis (disease progression) has made misdiagnosis of IPF a common problem. In fact, a recent study showed that more than 50% of IPF patients may be initially misdiagnosed (3). Further complicating the difficulty in diagnosis is the fact that there are more than 100 different types of interstitial lung diseases (ILD), and it has not been until recent times that the American Thoracic Society (ATS) recognized IPF by its specific clinical and pathological characteristics (10). At times, progress was slowed by an incorrect understanding of the pathophysiology, inability to perform adequate clinical trials, and a failure to communicate and collaborate within the research community (11).
IPF has no strong demographic profile; it is found in equal proportions in urban and rural environments. A history of smoking has been associated with an increased risk of IPF, and a variety of published studies show that, on average, two thirds of those with IPF have a history of smoking(3).
IPF affects more men than women and most commonly occurs between the fifth and seventh decades. The median age at time of diagnosis is approximately 63 years old according to a variety of published studies; however, IPF has been diagnosed from early adulthood into the late eighties.
Symptoms of IPF aren't always present when the disease starts and may not be present until the disease has progressed. The main symptom is shortness of breath, also known as dyspnea. Many patients describe it as a feeling of "breathlessness." Many individuals, especially older patients, often ignore the occasional difficulty with breathing, attributing it to just "getting older" or "being out of shape." As the condition progresses and the damage to the lungs become more severe, breathlessness may occur with minor physical activity such as showering, getting dressed. Speaking on the phone and eating becomes more difficult and sometimes nearly impossible. Other common symptoms include:
? Chronic dry, hacking cough
? Fatigue and weakness
? Discomfort in the chest
? Loss of appetite
? Rapid weight loss