EZ EE K
BY SANDRA G. BOODMAN
S
he had conducted the online search so often it had become a compulsion,
even though the result was invariably a dead end. But one weekend in
April 2019, Nancy M. Chiancone settled into a Starbucks near her
suburban Maryland home, flipped open her laptop and typed her
increasingly desperate question, “Why can’t I get a diagnosis?” into a search
engine. To her surprise, something new and actionable popped up. ¶ Chiancone
had no way of knowing that the serendipitous result would, months later, lead to
the answer that had eluded doctors for more than three years. It would provide an
explanation for her alarming deterioration, which had left the Prince George’s
County Public Schools instructional specialist who had participated in 5K races
with a dragging left foot, an inability to walk without a cane and a failing memory.
More than a year earlier, Chiancone had been told she had amyotrophic lateral
sclerosis (ALS), a devastating diagnosis that was subsequently withdrawn. ¶ But
the specialists treating her, who had prescribed powerful medications that would
later be called into question, were stumped. ¶ That changed when Chiancone’s
chance query led her to the Undiagnosed Diseases Program (UDP) at the National
Institutes of Health, where an astute neurologist zeroed in on a confluence of
factors that had been overlooked. Five weeks after her NIH work-up, Chiancone’s
illness was identified and she began treatment that has largely restored her
health. ¶ “Our program has the capacity to look at these difficult cases without the
pressures of a busy practice,” said Camilo Toro, director of the Adult Undiagnosed
Diseases Program who heads the team that treated Chiancone. “I’ve seen
hundreds of patients and in the first week of evaluation I’ve been able to diagnose
three.” Chiancone was one of them. SEE MYSTERIES ON E4ILLUSTRATION BY CAM COTTRILL FOR THE WASHINGTON POST
BY JARED WHITLOCK
Keane Hayes scanned the ocean’s
depths for lobster on a hazy fall morning
in 2018, about 200 yards from Beacon’s
Beach in San Diego. He dove down 10 feet
to inspect a ledge with potential as a
crustacean hiding spot. Surfacing empty-
handed, his outstretched body violently
jerked.
Keane thought his diving buddy might
be pranking him. Then blood pooled
from his ripped wet suit. The 13-year-old
screamed and kicked across the water to
a kayak with three men, including an
off-duty police officer and off-duty life-
guard, who paddled Keane to shore.
He never saw the shark.
SEE HAYES ON E5
A teen survivor
of a shark attack
returns to ocean
BY CHRIS VELAZCO
After one fitful night recently, the
chunky fitness watch I’ve been wearing
for a few months delivered some bad
news: I had spent only five minutes in
rapid eye movement, or REM, sleep.
The rest of the numbers didn’t seem
much better. Twenty-four minutes of
“deep” sleep. Close to six hours of lighter
sleep. More than an hour and a half
awake and an average of about 15
breaths per minute.
That’s a lot of information, certainly.
And it at least partly explains why I spent
the following morning in a mental fog.
As it turns out, however, the subsequent
days I spent agonizing over some of
those numbers might have been less
helpful than I thought it was.
According to the Centers for Disease
Control and Prevention, people who
routinely sleep less than seven hours a
night are more likely to report medical
conditions such as heart disease, dia-
betes and depression. It’s no wonder,
then, that wearable gadgets — such as
those worn by about 20 percent of
American adults — spit out sleep-related
figures meant to help us understand our
time away from consciousness.
The catch? Sometimes those numbers
SEE SLEEP ON E6KLMNO
HEalth&Science
TUESDAY, MAY 17 , 2022. SECTION E
MEDICAL MYSTERIES
T ENACITY
PUT A FINGER
ON HER ILLNESS
She felt increasingly hopeless as her memory and body declined
HELP DESK
Looking for
better wearables
BY JILL ADAMS for a better sleep
The spring weather may have prompt-
ed you to start running outside or you
may be considering returning to the gym,
when the coronavirus seems less of a risk.
I’m looking forward to hiking in the
mountains of New York once mud season
has passed.
You might expect to feel out of shape,
and you probably gird yourself for the
sore muscles you’ll have after that first
real workout.
What is that soreness all about? Is it an
indicator of damage or of growth? And
how should you deal with muscle sore-
ness — should you rest or keep moving?
The muscle soreness that emerges the
day after a workout is called delayed-on-
set muscle soreness — or DOMS — by
SEE SORENESS ON E5
How should
you deal with
sore muscles?
ELLIE HAYES
Keane Hayes at a beach in September.
He was bitten by a shark in 2018.
GLOBAL WARMING
Earth to briefly hit threshold. E2
EXERCISE
Taco Bell item inspires man. E4
PANDEMIC
Making decisions is tiring. E6
CLIMATE CHANGE
It will result in new viruses. E3
SETH PINCUS, ELIZABETH FISCHER,
AUSTIN ATHMAN/NIH/ASSOCIATED PRESSA human T cell under attack by HIV.