Family, friends and neighbors remember Lisa Sandler
Spaeth as an active mother of two in
Potomac, Md., with a lot on the go, juggling her son's
baseball games, her daughter's horseback-riding
lessons, numerous committee obligations, organizing women's
activities at her synagogue and the
thriving home business turned wholesale supplier —
making custom hair accessories for children — that
she founded with her mother.
But Spaeth also was 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
It is with people like Spaeth in mind that researchers
at Johns 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 in July in the journal
Chest, senior study investigator and
Sonye Danoff, who treated Spaeth, found more than twice the
number 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
"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," said Danoff, an assistant professor in the Johns
Hopkins School of Medicine.
The latest study results back up previous research by
Danoff and other sleep experts at Johns
Hopkins that 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.
It is during the R.E.M. period that rapid eye
movements occur (hence the name), people dream
and 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 said, "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
Also in this latest Johns Hopkins study are survey
results assessing quality of life and quality of
sleep. They 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
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," Danoff said.
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 Lisa 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," Danoff said.
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
Maryland-based Robert M. Fisher Memorial
Foundation pledged $2 million to Johns Hopkins to help fund
Danoff's future studies into pulmonary
"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," Danoff said.
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 Johns Hopkins Hospital's General Clinical
In addition to Danoff, Johns Hopkins researchers
involved in these studies, conducted solely in
Baltimore, were Vidya Krishnan, Meredith McCormack, Stephen
Mathai, Maureen Horton and Nancy
Collop. Additional assistance was provided by Shikhar
Agarwal, of the Johns Hopkins Bloomberg
School of Public Health; Brittany Richardson, of the
University of Maryland; and Albert Polito, of
Mercy Medical Center.