Idiopathic Pulmonary Fibrosis Awareness Week and You
Published September 28, 2005
In the aftermath of the hurricanes that have ravaged the Gulf as well as so many other news items of interest, there is an event coming in October which probably will not garner much attention. I'm writing today about National Idiopathic Pulmonary Fibrosis (IPF) Awareness Week which takes place from October 5 - 11. The Coalition for Pulmonary Fibrosis started this Awareness Week to "heighten awareness of IPF within the congressional community and federal agencies." While the CPF has noble intentions, Congress rarely acts beyond the usual lip service of getting a mention of a disease in the Congressional Record as well as issue a meaningless proclamation that isn't backed up by actual funding or direction to obtain funding. Pulmonary Fibrosis is a group of lung diseases that are characterized by scarring of the lungs. As most caregivers of IPF know, the ravages of IPF are horrible for the patient and family. The Duke University Medical Center in North Carolina, issued a report this week stating that "evidence shows that the condition (Idiopathic Interstitial Pneumonia) arises from a combination of a genetic predisposition and damage due to inhaled chemicals, notably from cigarette smoking ". Of course, there's more than one disease under the umbrella of IPF.
In order to understand the cruelty of IPF one needs to become aware of its fury. From the Respiratory Medicine Channel: Idiopathic pulmonary fibrosis is a chronic progressive scarring disease of the lung in which gradually the walls of the air sacs of the lungs become replaced by fibrotic tissue. When scarring forms, there is an irreversible loss of the tissue's ability to transfer oxygen into the bloodstream. IPF doesn't discriminate. IPF affects about 83,000 people in the United States, with an estimated 31,000 new cases diagnosed each year. About two thirds of IPF patients die within 5 years. Even with all the advances in medicine in the last 50 years, misdiagnosis often occurs. The medical community still has much to learn about the causes of the disease and how to treat it.
In its early stages, IPF slowly inflames the air sacs in the lungs. As time goes by this inflammation reduces the lungs' ability to transfer oxygen to the blood. Slowly this inflammation causes scar tissue to develop which begins to 'stiffen' the lungs. As the lungs continue to lose their ability oxygenate the blood, high blood pressure kicks in. There is eventual damage to the right side of the heart. Ordinary things like talking on the telephone or getting out of bed become almost impossible. The patient always feels like he/she needs air and is not getting it. It is a slow, torturous death for the patient. Their last months are spent fighting for every breath they take. Caregivers can stand by helplessly watching their loved ones slowly suffocate to death. As I stated earlier, misdiagnosis often occurs with IPF because medical professionals are still struggling to determine the causes and identify the specific symptoms of IPF. There's research being performed today in medical centers and by pharmaceutical companies but research dollars are becoming scarce. In an article in JAMA, the American Medical Association's Journal, it is noted that more than 55% of Americans favor increases in medical research funding. With all the demands placed on the government's bank account these days, the promise of medical funding is withering away.
- Idiopathic Pulmonary Fibrosis Awareness Week and You
- Published: September 28, 2005
- Type: Opinion
- Section: Sci/Tech
- Filed Under: Sci/Tech: Science
- Writer: Silas Kain
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- Silas Kain's personal site
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Comments
I just accessed the link, Laura, and it works for me.
This link will take you directly to the Duke MedNews site where there is more information on the study.
My sister (53) was recently diagnosed with IPF. I lost my only brother in 1981 when IPF was extremely rare. Through my research on the internet I am saddened to learn that they really have not learned a lot about this disease with the exception of lung transplants. Thank God for those. My sister is not a candidit for one. I am also being tested for this. I get the results of my lung cat scan next week.
My Mother Premlata Aged 62 years suffering from Idiopathic Pulmonary fibrosis since June 2004 based on x-ray & she is being treated by Dr. P.R. Gupta pro. Tuberculosis &chest at Jaipur.
Main medicines are Azoran (azathioprine) 50 mg. and Prednisone 10-20 mg and more over she is being given calcium and vitamin also.
In March 2008 she is required oxygen therapy. I have take oxygen slander for him.
I am anxious to know if there is any other medicine or therapy that can help in her Idiopathic Pulmonary fibrosis.
I would be grateful if you advise me above more details & place where she can get advance & helpful treatment.
Jitendra porwal
[Personal contact info deleted]








My family is well acquainted with this disease. I tried to access the link to Duke's report, but it did not work for me. Can you provide the name of the report and/or the site that the link goes to? Thanks very much.