ILDs, 9/11, veterans and the news

Here’s a prediction: News reports about Interstitial Lung Disease, or ILD, will increase. A group of rare diseases is becoming rarer.

The view from my roof on Sept. 11, 2001.

The 10th anniversary of 9/11 is the likely first source for news about ILD. Veterans returning from the Iraq and Afghanistan wars, the American response to 9/11, are a troubling possibility, as well.

The James Zadroga 9/11 Health and Compensation Act of 2010 (pdf), signed into law last January, provides health care and compensation to first responders and Lower Manhattan residents sickened by the toxic dust from the World Trade Center attacks. ILD is on the list of illnesses covered. In a controversial move, Congress did not list cancer but instead required periodic reviews to determine whether cancer should be added.

In late July, the National Institute for Occupational Safety and Health issued its first review cancer links to the 9/11 attacks (pdf) and concluded cancer will not be added this year. Another review is due next year.

ILD appears to have received its most news coverage so far this year when a July 26 story by Cristian Salazar of The Associated Press had this as its second paragraph: “A federal review of scientific evidence, required under law and published Tuesday, supports keeping cancer off a list of Sept. 11 health problems including asthma, interstitial lung disease and mental illnesses such as post-traumatic stress disorder.”

A Google news search scored 381 hits on the phrase “including asthma, interstitial lung disease and mental illnesses such as post-traumatic stress disorder.” Not all credit Salazar or the AP. My newsroom experience doubts it is a coincidence, but I’ll limit my purpose to ILD awareness.

In contrast, The New York Times summed up the list in the Zadroga act as “a specific list of illnesses, mainly asthma and other respiratory diseases.” The Times article, which did not mention ILD, was not as widely used as AP’s.

As the Sept. 11 anniversary nears and reporters search the Internet for an angle,  perhaps they will find that Salazar article and be curious about interstitial lung disease.  Heroes with a federally recognized disease that few people have heard about makes for a good story. (My journalist friends are free to steal this idea.)

Veterans diagnosed with lung disorders after deployments in the Middle East may also raise awareness of ILD. They already have the attention of the American Thoracic Society, which held a session on the topic in May at its 2011 International Conference in Denver. According to a report in ScienceDaily on the session, disorders found include constrictive bronchiolitis, asthma and “the rare interstitial lung disease called nonspecific interstitial pneumonitis associated with inhalation of titanium and iron.”

I didn't believe my eyes when the first tower fell.

On July 21, The New England Journal of Medicine published findings of a study at Vanderbilt University of veterans returning from Iraq and Afghanistan with severe respiratory issues.  Researchers said 38 cases of constrictive bronchiolitis were found in 49 veterans who had open lung biopsies. Constrictive bronchiolitis is a debilitating and largely untreatable condition but not an ILD. Some ILD cases, however, were also found. No matter the diagnosis, the findings are disquieting and out of proportion with soldiers who have served elsewhere.

Vanderbilt is a leader in investigating lung disorders in veterans and research is continuing. Slides from the Vanderbilt study will be reviewed at National Jewish Hospital in Denver by a researcher who has a grant from the Department of Defense. A report in Army Times on the Vanderbilt research is perhaps most notable for the comments posted by readers that underscore the likelihood this issue will continue in the news.

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Nonspecific Interstitial Pneumonitis: What is it? Who knows?

Focus is important in a blog: otherwise gaps develop. (See huge gap in archives.)

I recently developed a new focus or, at least a major distraction: Nonspecific Interstitial Pneumonitis, or NSIP.

NSIP is an Interstitial Lung Disease, or ILD, a group of disorders I learned of in May during my initial appointment with a pulmonologist. He said I didn’t have an ILD and that was good because these were nasty. At the meeting, it was clear the pulmonologist had been briefed by my primary care physician who had told me for more than a year that my concern about shortness of breath was unwarranted. Still, the pulmonologist said I should go ahead and get an X-ray.

The X-ray led to a high resolution CT scan, followed by a call about “abnormalities.” The pulmonologist said he was surprised. Me, too. I sought the referral thinking I needed an antibiotic, not a surgical lung biopsy involving a robot and video: ouch. Before the surgery, a Pulmonary Function Test had bad numbers; another surprise to the doctors and a vindication I could have lived better without. The NSIP diagnosis was delivered June 30.

The pulmonologist was right, ILDs are nasty.

NSIP turns out to be one of the better ILDs. Nevertheless, it has changed my life and is likely to shorten it. “More favorable prognosis than …” often appears in descriptions of NSIP, followed by a reference to something evil. In NSIP’s favor is that treatments are available. Some ILDs have no effective therapy other than a lung transplant. Prognoses can be as dire as for lung cancer.

A diagnosis like this and four biospsy incisions get your attention. It seems a good place to direct my decades of journalism skills in research, synthesis and writing.

NSIP is rare. To search for it on the Internet, spell it out or at least type “NSIP lung.” The National Sheep Improvement Program in Australia was at the top of my first Google search for NSIP.  [Update 6/4/2012: The sheep site is now on Google’s malware list and I removed the link.] Wikipedia gives Non-specific Interstitial Pneumonia 20 words in two sentences (not counting footnotes): one sentence merely says it has a better prognosis than Usual Interstitial Pneumonia, where you can click to read a scary outcome.

NSIP is new. It was identified in 1994, which enabled all the doctors I’ve talked to about it to have told me it didn’t exist when they were in medical school. The American Thoracic Society and the European Respiratory Society in 2002 elevated NSIP to a provisional diagnosis of an Idiopathic Interstitial Pneumonia, which is a group of ILDs that includes Idiopathic Pulmonary Fibrosis and Usual Interstitial Pneumonia, a deadly pair often cited together as IPF/UIP.  NSIP was cited to explain why some patients originally diagnosed with IPF/UIP responded better to treatment and lived longer.

The 1994 finding inspired research. A new diagnosis calls into question every previous study where a subject thought to have one disease might suffer, in fact, from something else. The 2002 decision by the two groups of pulmonologists came with a recommendation for increased research to better define NSIP, including distinguishing features, prevalence, its relationship to other types of ILDs and whether further subclassification should be made. In 2008, the American Thoracic Society Project concluded that idiopathic NSIP is a distinct form of Idiopathic Interstitial Pneumonia but called for more study of both idiopathic NSIP and NSIP linked to known associations.

Academic journals of the last 10 years provide a volume of studies about NSIP that belies its rarity. Readers with a personal interest in answers, like me, can be disconcerted to find controversy in the continued debate to define NSIP and mystery in metrics being crunched in a quest to best predict survival.

NSIP is diagnosed by eliminating other possibilities. It is easier to say what it isn’t than what it is: not surprising for a disorder with “nonspecific” in its name. In addition to disagreement over a hyphen in nonspecific, it is sometimes called pneumonia and sometimes, my preference, pneumonitis (noo-moe-NIE-tis). The 2002 document that made it a provisional diagnosis acknowledges the name’s indecisive nature, noting: “Although there are several reasons to be critical of the term NSIP, one advantage is that the name implies the uncertainty that prevails.”

“Broad” and “heterogeneous” are often used to describe the family of Interstitial Lung Diseases. It’s a big group and information can be, well, nonspecific: ILDs number more than 100, more than 130, about 180 or more than 200.  That makes for a lot of names, many using the same words. Diseases can have different names in different countries. Some ILDs are from a known cause or association, with — thanks to lawyers with advertising budgets — the best-known example being asbestosis. Others have an unknown origin and a name that may include “idiopathic.” Even NSIP’s subgroup of Idiopathic Interstitial Pneumonia is described as heterogeneous.

What’s common among ILDs is inflammation deep inside lungs of the interstitium, the tissue around the tiny air sacs, or alveoli, where oxygen enters the blood stream and carbon dioxide exits. In people with interstitial lung disease, this tissue becomes stiff or scarred, and the air sacs lose the ability to expand.  The inflammation can lead to scarring, or fibrosis. Inflammation can be stopped and reversed; scarring cannot. If inflammation or scarring prevent the air sacs from expanding or make the tissue too thick for the gas transfer, less oxygen is available to the body and its organs. Lungs become smaller and less flexible. You don’t see it in the academic journals, but “slowly petrifies” gets the point across in news reports.

NSIP has its own subgroups. By structure, it is divided into cellular, fibrotic or mixed fibrotic and cellular. Survival statistics worsen as fibrosis increases. Another grouping looks at associations: autoimmune diseases including lupus, arthritis or AIDS; environmental exposures; prior acute lung injury; and unknown.

Breathe deep.

The structural and associational subsets, along with diseases that were underlying or that develop, combine in different ways to challenge physicians who attempt to treat an ILD that is actually treatable. A favorite sentence from my reading appears in “Fibrotic Idiopathic Interstitial Pneumonia: The Prognostic Value of Longitudinal Functional Trends” by Panagiota I. Latsi et al:  “Thus, it has been argued that when a histopathologic diagnosis of NSIP has been made, the work of the clinician has only just begun.”

Also, the focus of the patient begins.

Posted in Idiopathic Interstitial Pneumonia, Interstitial Lung Disease, Nonspecific Interstitial Pneumonitis | Tagged | 12 Comments

Freewheeling Amsterdam

Susan Kille

At a popular photo spot.

A travel piece I wrote about Amsterdam has been published in Gainesville Magazine and I am unabashedly posting the link. It was my second trip to Amsterdam and plans are under way for a return next fall.

What you will find if you click the link is a representation of the printed magazine, not the usual web page. It has the advantage of showing the care and gorgeous layout by the editors and designers, who I thank for their work.

The photos are by Tom Sawyer (yes, Tom Sawyer), who also took the above photo.

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WeMedia gets personal

Indeed, it’s personal. That’s true if you are a person, group or business. “This Time It’s Personal,” presented Wednesday by Andrew Nachison and Dale Peskin of WeMedia at the Digital Sandbox in New York , made that clear.

“We no longer have ourselves defined by mass media,” said Stowe Boyd, who describes himself on Twitter as a “social philosopher and webthropologist.”

Streams of information sources we select and the “nattering among ourselves” have become the most important connections in the world, Boyd said.

Mona Eltahawy is an example how a stream of information becomes important and trusted.

Eltahawy is an independent journalist, which has always been a difficult way to make a living although the challenges are changing with the waning influence of mass media. It is hard to get notice and to get paid for your work if a media outlet does not employ you. Yet, Eltahawy has been in a spotlight and in increasing demand as a speaker as her Twitter following jumped from about 4,000 in mid-December to 46,600 and counting.

What happened? Unrest in Tunisia began spreading through the Arab Muslim world. Tunisia was a story that major media ignored for weeks until just before Jan. 14 when President Zine el Abidine Ben Ali fled the country, Elthawy said. Meanwhile, the people who took the growing unrest personally turned to Twitter and Facebook. As a native Egyptian who calls herself “a proud liberal Muslim,” Eltahawy took notice. She began to retweet and curate what she read online. She has become a trusted, timely source of news from the Mideast. She does it by paying attention to her own trusted sources and using her audience to help her fact check.

Eltahawy, who is based in New York, said her role is that of a “connector” and “amplifier of voices,” not a spokeswoman. Making connections and telling stories sounds like the role mass media has had.  Eltahawy, however, has made it personal.

Meetup has allowed groups to become personal. People who once met on Internet bulletin boards can now meet face-to-face, as long as they live in the same place. Gatherings focusing on almost any topic can be found at Meetup.com. If you can’t find what you want, just create it. On its website, Meetup says 7 million people have signed up for more than 75,000 local groups.

Scott Heiferman, co-founder and CEO of Meetup, said Meetup helped the Tea Party grow into a national movement through a network of local meetings. Meetup also has meetings for Democrats, Socialists and Libertarians.  It connects owners of pugs in Spokane, wilderness backpackers in Atlanta and vegetarians in Hoboken. Mass media outlets such as Huffington Post and Oprah use Meetup get personal with their audience.

Communication is most powerful when it’s personal. Heiferman demonstrated that by asking audience members to introduce themselves to a neighbor. The room became noticeably energized. Simply, you are better able to trust – or untrust – someone you know.

The success of Meetup, Heiferman said, is that it “uses the Internet to get off the Internet.” In other words, it makes it personal.

Companies need to get personal to compete. A 30-second Super Bowl commercial does not have the power it used to, said Roo Rogers, co-author of “What’s Your’s Is Mine: The Rise of Collaborative Consumption.” The commodity companies need now to reach customers, he said, is trust.

Steve Rubel, senior vice president for insights at Edelman PR, agreed. “We are entering an era of validation in social media,” he said. The democratization of social media means there are too many choices; consumers want trusted experts to filter information, he said.

“Great brands will prevail but branding is more critical than ever” he said. He said he advises companies to find subject matter experts who are good curators and allow them to communicate with customers. “Every company can be a media company,” he said.

An audience member questioned how much brand loyalty a communications-savvy company can build. If something better comes along than Google, he said he’d switch.

Rubel responded that data collection allows companies to better insinuate themselves into your life in ways that prove useful and that create loyalty.

Hmmmm. That may be smart business but only up the point that it becomes too personal. The takeaway from the WeMedia’s day-long gathering was “trust.”

Craig Newmark, the founder of Craigslist (we don’t really need a link here, do we?) who last month launched CraigConnects, summed it up nicely.

“Trust is the new black,” he said.

To that end, Newmark said he has become a news consumer advocate who is working to increase integrity and figure out what’s worth paying for. He noted, as he must, some irony. Certainly many factors have reduced newspaper revenue and jobs in journalism, but Craiglist’s drain on classified advertising came early and hit hard.

Citizen journalism would be improved by collaboration and networks of fact-checking between professional journalists and citizens. He said he’d be willing to spend money on that. No doubt, there are former journalists who built a career on trust are willing to work with him on that.

Now, that’s personal.

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Piecing stories & quilts

Red and white and told all over.

Storytelling is like a collection of red and white quilts.

Each is an art form working with a few elements but with results limited only by imagination. This thought swirled around me at “Infinite Variety: Three Centuries of Red and White Quilts,” a dazzling and intoxicating display of 650 quilts. Double-sided spirals of creativity writ in red and white filled the 55,000-square-foot drill hall of the Park Avenue Armory in Manhattan and reached up toward the eight-story ceiling.

Each quilt, like a well-told story, was unique. Each was made by hand, constructed with skill and care and benefited from experience, framework, thought and art.

Two elements: many expressions.

The red and white color scheme comes from a dye known as “Turkey red dye” that arrived in Europe in the 1750s. Compared to other dyes of the time which faded with washing or light, this dye was remarkably colorfast. It was made from madder root and came from the eastern Mediterranean. It has been found in the tombs of Egyptian pharaohs and was used in the red coats of British soldiers. A cheaper, synthetic dye called alizarin crimson with similar color and colorfast properties became available in 1868 and spurred an increase in red and white quilts.

You may have heard of a 2004 book by Christopher Booker, a columnist at the Sunday Telegraph in London, called  “The Seven Basic Plots: Why We Tell Stories.” Here is Booker’s list:   Overcoming the Monster,  Rags to Riches, The Quest, Voyage and Return, Comedy, Tragedy and  Rebirth.

Circular displays recalled sewing circles.

Karl Albrecht, a management consultant, futurist and author, wrote a blog last May for Psychology Today called “The (Only) Ten Basic News Stories: How the News Producers Grab and Hold Your Attention.” Maintaining that the commercial news process suffers from an industrial model, Albrecht produced these variations: Shock and Horror, Tragedy, Hot Sex, Scandal,  The Fall of the Mighty, Conflict, Worry, Voyeurism, Dilemmas and Gee-Whiz Stories.

Every quilt was different.

Storytelling involves basic elements: observation and compilation. It stirs arguments to put a number on available plot lines but writers and editors definitely recognize recurring patterns. The result can be mundane, marvelous but more likely, somewhere in between.

In talented hands, a familiar theme takes new life again and again. William Shakespeare, for example, took stories told first by others and made them into a canon of our literature.

And, in turn, the title of the Armory show was taken from Shakespeare’s “Antony and Cleopatra”:

Age cannot wither her, nor custom stale
Her infinite variety …

“Infinite Variety,” alas, was open for only six days, March 25-30. I went near the end of the last day and was among those the guards had to coax to leave. In a town of dour-faced pedestrians with downcast faces, the Armory was filled with smiling people looking upward in awe.  Women dominated but there were plenty of men. Some people were dressed like they lived on Park Avenue, while others looked ready for a stroll in the park. Needlework was examined as closely as brushstrokes on paintings at the Metropolitan. Clumps of experts in stitchery chatted and did not mind if you listened or asked questions.

Under spotlights in the Armory, the quilts hanging high shimmered in the air shone in infinite variety. They made their owner, Joanna Semel Rose, and her husband, Daniel, my latest heroes. The Roses assembled a dizzying display about using what you know to make art. The quilts made me wonder about the stories of their authors, women from three centuries working alone and with friends.

In the brochure accompanying the show, Mrs. Rose writes:

“When my husband asked what I would like for my eightieth birthday, I said, ‘Something I’ve not seen before and something that would be a gift for New York City.’ Seeing all of these quilts at the same moment would be the ideal gift. I did not set out to collect quilts. I have the instincts of a treasure hunter, not a collector. I had no clue to how many red and white quilts I owned. They came up at flea markets in the 1950s for five and ten dollars or were often used to wrap purchases. In the latter decades of the twentieth century came the realization of their originality and graphic beauty.”

The show was presented by the American Folk Art Museum but thanks to the Rose family it was free. It has been called the largest exhibit of quilts ever in New York and that claim seems reasonable. A book is promised and there the show may travel. You can see photos of each quilt and read more about the exhibit in free apps for the iPhone, iPad, iPod touch or Android smart phone available at the Apple iTunes App Store or Android Market.

Mrs. Rose was the longtime chairwoman of Partisan Review magazine and Daniel Rose is the chairman of Rose Associates, a real estate development company. Long may they live. Exiting visitors took their place patiently in a line to leave a note to Mrs. Rose in the guest book. I thanked her for sharing her birthday with us.

Posted in Plots, Red and white quilts, Storytelling | Tagged , , , , , | 1 Comment