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Researchers link the extreme fatigue in pulmonary fibrosis to loss in body-rejuvenating R.E.M. sleep

Published: Tuesday, 29-Jul-2008

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Medical Condition News

Family, friends and neighbors remember

Sandler Spaeth as an active mother of two in Potomac, Md., with a lot

on the go, juggling her son's baseball games and her daughter's

horseback-riding lessons with numerous committee obligations,

organizing women's activities at her local synagogue. Add to this

Spaeth's thriving home business turned wholesale supplier - making

custom hair accessories for children - which she founded with her

mother.

But Spaeth was also diagnosed with pulmonary fibrosis, a

hard-to-treat disease that progressively damages the lungs and starves

the body of oxygen. For two years after her diagnosis, until her death

in May 2007, at age 44, Spaeth was beset by fatigue. Her energy levels

sank as her lungs deteriorated. Breathing became difficult, and she

could no longer attend many of the sporting events, trade fairs and

women's groups that filled her life.

It is with people like Spaeth in mind that researchers at s Hopkins

and elsewhere have found what is likely to be the first evidence

linking the extreme fatigue in the lung-scarring disease, which has no

known cause, to the poor quality of sleep that results - as much as a

25 percent loss in body-rejuvenating R.E.M. sleep. And they have also

gauged the detrimental effects this has on people's daily lives, nearly

halving test scores used to assess physical and mental quality of life.

In a report appearing this month in the journal Chest,

senior study investigator and pulmonologist Sonye Danoff, M.D., Ph.D.,

who treated Spaeth, found more than twice the amount of nighttime sleep

disturbances and double the number of daytime episodes of drowsiness

among 41 men and women with so-called idiopathic pulmonary fibrosis

than in people with healthy lungs.

"Physicians should strongly consider monitoring people with this

scarring lung disease for sleep disorders as part of their standard

care, because poor sleep has a profound effect on their quality of

life," says Danoff, an assistant professor at the s Hopkins

University School of Medicine.

The latest study results back up previous research by Danoff and

other sleep experts at s Hopkins, which showed that 18 of 22 people

with fibrosed lungs had problems breathing while asleep. The majority

of them dropped out of R.E.M. sleep during the night, losing 25 percent

of total R.E.M. sleep time.

It is during the R.E.M. period that rapid eye movements occur (hence

the name), that people dream and that the body recovers from the

previous day and builds up energy for the next.

Pulmonary fibrosis makes people highly vulnerable to sleep problems,

Danoff says, because they often breathe twice as fast to supply the

body with oxygen. And just as breathing and other body functions

naturally slow down at the onset of R.E.M. sleep, these people who

depend on a higher rate of breathing are constantly being pushed to

wake up from a lack of oxygen.

"Essentially," she adds, "the body's internal alarms go off as

people enter the most rejuvenating part of sleep. And when people don't

get a good night's sleep, they cannot function normally the next day.

It's a slippery slope that gets progressively worse over time."

Also in this latest s Hopkins study are survey results assessing

quality of life and quality of sleep, which showed that people with

stiffened lungs and sleep problems have 40 percent lower scores in

physical activities compared to the general U.S. population. Rated

activities included basic tasks, such as going to the mailbox and

walking to the car. Mental and social activities, such as carrying on a

conversation with a store clerk or telephoning friends and family, were

reduced 48 percent.

Sleep quality was assessed on a scale comprising 36 different sleep

measurements, such as the length of time it took to fall asleep and

overall time spent sleeping.

Moreover, the team's analysis showed that sleep problems could not

be predicted by other demographic factors, such as age, gender, race or

weight. Nor were they linked, researchers say, with other lung function

and more noticeable disease symptoms, including shortness of breath and

cough.

"Because there is so much about pulmonary fibrosis that we cannot

yet fix, we need to focus on what we can fix while we wait for research

to catch up with treatments that can prevent or reverse the disease,"

says Danoff.

Current treatments for pulmonary fibrosis are limited to steroids

and other immune-system-lowering drugs that help slow down lung tissue

deterioration as the thin walls of the air sacs stiffen and lose

capacity to freely expand and contract.

More than 200,000 Americans suffer from pulmonary fibrosis, whose

cause remains unknown. And the lung disease kills nearly 40,000 each

year.

"If we had been able to treat Spaeth's fatigue from poor

quality sleep, then she might have had more time to lead her life as

fully as she had been prior to getting sick," says Danoff.

Despite Spaeth's death, her zest for life carries on. Her mother,

Froma Sandler, maintains the business. And through the encouragement of

family and friends, more than a thousand people have donated to medical

research in Spaeth's honor. The largest-ever contributions arrived in

May, just prior to the first anniversary of Spaeth's death, when the

land-based M. Fisher Memorial Foundation pledged $2 million

to s Hopkins to help fund Danoff's future studies into pulmonary

disease.

"This research funding will lay the groundwork for a more

consolidated and comprehensive look at the many factors that may

improve and extend the lives of patients with pulmonary fibrosis: from

rehabilitation of the lungs to the development and testing of new

medications to offset losses in quality of life from fatigue," says

Danoff.

Danoff plans to use some of the funding to support studies that

monitor patients with pulmonary fibrosis for problems in sleep

patterns, especially in deep-sleep R.E.M. patterns, to target for

treatment.

Another phase of research, she says, involves testing new devices to

support breathing during sleep and to see if these devices improve

quality sleep time and abate fatigue.

Funding for this latest study was provided by a fellowship grant

from the CHEST Foundation, the philanthropic arm of the American

College of Chest Physicians, which also publishes the journal Chest,

and by The s Hopkins Hospital's General Clinical Research Center.

In addition to Danoff, other Hopkins researchers involved in these

studies, conducted solely in Balimore, were Vidya Krishnan, M.D.;

Meredith McCormack, M.D., M.H.S.; Mathai, M.D., M.H.S.; Maureen

Horton, M.D.; and Collop, M.D. Additional assistance was provided

by Shikhar Agarwal, M.D., from the s Hopkins University's Bloomberg

School of Public Health; Brittany , from the University of

land; and Albert Polito, M.D., from Mercy Medical Center.

http://www.hopkinsmedicine.org/ and http://www.chestjournal.org/

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