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November 03, 2004

More Hope For IPF Patients

More hopeful news in the fight against IPF:

Anticancer Drug to Fight Fatal Lung Disease,...
Anticancer Drug to Fight Fatal Lung Disease, Idiopathic Pulmonary Fibrosis [via Blogdigger Search: Pulmonary Fibrosis]

I'm really glad to see more coverage of IPF online and in the news. IPF is one of those conditions that so many people have never heard of, and is a pretty hellish thing to have.

Posted by snooze at 10:25 AM | Comments (0)

October 08, 2004

Pulmonary Fibrosis and Interferon

I hadn't heard about this article until just now so thought I'd share it. My doctor did not recommend that I try this treatment as he felt that the variety of IPF I had wouldn't be helped by it, but I know of a lot of people who were really happy with the results they had on it. So I am kind of surprised at this report. At least there seems to be hope that it will help people with mild to moderate symptoms.

Interferon a No-Go for Pulmonary Fibrosis

WEDNESDAY, Jan. 7 (HealthDayNews) -- A once hopeful treatment for pulmonary fibrosis, a fatal disease of the lungs, appears to have little or no effect on progression of the disease or on quality of life, a new study has found.

There remains some optimism, however, that the treatment, interferon gamma-1b, might benefit patients with mild to moderate symptoms of the disease. The authors of the study, which appears in the Jan. 8 issue of the New England Journal of Medicine, are launching a new trial to test this hypothesis.

The median survival time for patients diagnosed with pulmonary fibrosis is only two to three years. The disease results in a scarring of the lungs that eventually prevents the lungs from fulfilling their primary mission of delivering oxygen to the body. The only effective treatment is lung transplantation, although many people are treated with anti-inflammatory and immunosuppressive drugs, both of which have side effects... [www.medicinenet.com]

As for me, I'm just waiting for a lung to come up for me on the transplant list and wondering why this article just popped into my aggregator now if the article is from January.

Posted by snooze at 01:59 PM | Comments (0)

September 20, 2004

More Developments in the Study of Pulmonary Fibrosis

This one actually didn't seem too surprising to me, but it is cool that they were able to find the connection.

New Light Shed on Deadly Lung Disease

TUESDAY, Aug. 3 (HealthDayNews) -- New research holds out hope for people suffering from pulmonary fibrosis, a deadly lung disease, by discovering that cells that travel to the organ to repair damage end up doing more harm than good.

The study found these biological repairmen, which experts had thought originally resided in the lungs, were actually adult stem cells that migrated there from the patient's bone marrow -- and this migration can be halted.

...

"It's certainly very exciting research, but the information is obviously very preliminary," said Dr. Alfred Munzer, a lung specialist from Maryland and past president of the American Lung Association. "We have to see what meaning it holds."

Pulmonary fibrosis is a chronic and often fatal disorder that is characterized by extra scar tissue in the lungs. The disease, which affects some 80,000 individuals in the United States, has traditionally been treated with steroids and other immunosuppressive therapies, but with little effect. About 70 percent of people die within five years of diagnosis. "At the moment, there is no effective treatment for pulmonary disease, and it is not that uncommon a disease," Munzer said. [medicinenet.com]

What I think about this is that it gives me hope for people who get IPF in the future. I'm already well on my way to getting a new lung, but that honestly isn't my first choice. And it isn't something available to all people. In many ways I'm very lucky in that I haven't gotten worse in well over a year (*knocks on wood*).

Posted by snooze at 12:20 PM | Comments (1)

More Pulmonary Fibrosis News

Here's an interesting article from a few days ago:

Adult Stem Cells Migrate to Lung, Contribute to Pulmonary Fibrosis

09 Aug 2004

UCLA researchers for the first time identified and then stopped a type of adult stem cell from migrating to the lung and contributing to pulmonary fibrosis in an animal model. Pulmonary fibrosis (i.e, idiopathic pulmonary fibrosis) in humans is a devastating terminal disorder that causes an overabundance of scar tissue to form in the lung.

IMPACT: The new study may offer novel therapies to treat idiopathic pulmonary fibrosis– currently there are no effective treatments and the mortality rate is approximately 70 percent within five years of diagnosis. Over 80,000 individuals in the United States suffer from the disease. [medicalnewstoday.com]

Posted by snooze at 12:10 PM | Comments (0)

September 18, 2004

Medbloggers

Jon Udell has a great post on Medbloggers, something that I didn't really realize existed until he wrote about it. Though we've got political bloggers, library bloggers, law bloggers, so it makes sense there would be medical bloggers.

Medbloggers

...

The numbers are small. Starting with Pho's blogroll, I began assembling a list of the medical bloggers who cross-reference one another. What I found confirmed Pho's estimate that there are no more than 100 of these medbloggers, many of whom are aggregated at medlogs.com. Nor are these medblogs yet widely subscribed. Pho today has 14 Bloglines subscribers. One of the founders of the movement, medpundit, today has 58. Those numbers are one or two orders of magnitude shy of the readerships of many of the tech blogs I follow. But unless fear of malpractice strangles this baby in the cradle, that will be a temporary phenomenon. In the long run there will be many more people hungry for informed analysis of medical issues than for informed analysis of tech issues.

This looks like a great opportunity to watch the blogging meme replicate throughout another community of practice. I'll be fascinated to see how it changes, but also is changed by, that community. Corporate techbloggers, for example, are learning to walk a fine line between acceptable sharing of information and punishable transgression. Medbloggers face a different set of issues: libel, privacy, and of course malpractice. See this American Medical News article for a useful overview. [Jon Udell's Weblog]

As you can tell from some recent posts I've started following medical information on Pulmonary Fibrosis online, mostly inspired by this article. I even found a blog called Bronch Blog to subscribe to.

Posted by snooze at 04:54 PM | Comments (0)

The Need For Patient Education

One thing that amazes me is how much information is available on medical conditions and how few people ever find it. Hopefully things like this can help with that.

Coalition for Pulmonary Fibrosis Announces Publication of New Educational Tools for Patients

Preliminary Results From Latest Research Initiative Demonstrate Need for Lung Transplant and Pulmonary Rehabilitation Education for IPF Patients and Caregivers

SAN JOSE, Calif., Sept. 17 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today the publication of two new educational brochures: 'Lung Transplantation: What Every Patient with Idiopathic Pulmonary Fibrosis Should Know' and 'Oxygen Management and Pulmonary Rehabilitation for the IPF Patient'.

The two brochures were created for patients, family members and physicians alike based on preliminary results of the CPF's Basic Research Questionnaire, an education initiative launched last year to better understand the impact of idiopathic pulmonary fibrosis (IPF) on patients and families, and to help the foundation grasp the educational needs that arise for those fighting the disease.

To date, the CPF has received more than 1,400 responses to this ground-breaking survey, and based on educational gaps identified by patients, discovered the need for improved education and awareness on two very important topics for IPF patients; lung transplantation and pulmonary rehabilitation.

Interim results of the CPF's research questionnaire found that among current patients, 30 percent responded that their physician has not discussed, or even mentioned the topic of lung transplantation, a potential treatment option for IPF patients under 65. Of those patients under the age of 60, fewer than half (47 percent) said they have been advised to seek a lung transplant. Additional data from a Duke University study also indicates that more than 50 percent of those with IPF who are on transplant lists will pass away before a donor lung becomes available. [via Feedster Search: Pulmonary Fibrosis]

This also makes me very thankful that I found the doctors I did as I went through my diagnosis. I was quickly forwarded to a pulmonary specialist and he was able to give me a preliminary diagnosis almost immediately. Once it was confirmed that I did actually have Pulmonary Fibrosis we sat down and talked about what it all means, what treatments were available, how things tended to progress, what it meant long term, the whole thing. I still find it kind of stunning that other people have not had this same experience.

Posted by snooze at 04:44 PM | Comments (2)

Possible New Treatments for Pulmonary Fibrosis

I've started hunting for news items to do with Pulmonary Fibrosis in my news reader, so will be making note of interesting developments that I find.

Treatment for pulmonary fibrosis may be achieved by blocking cell death in the lung

A research team at Yale has found that blocking a kind of cell death called apoptosis in fibrotic diseases of the lung, also blocks the fibrosis, opening new ways of looking at treatment for lung diseases such as pulmonary fibrosis. [via Feedster Search: Pulmonary Fibrosis]

Posted by snooze at 04:35 PM | Comments (0)