54 THE QUEENS COURIER • HEALTH • OCTOBER 26, 2017 FOR BREAKING NEWS VISIT WWW.QNS.COM
health
One breath at a time: The burden of
living with a rare respiratory disease
People suff ering from rare diseases can
oft en have challenges coping with their
illnesses. For those aff ected by a chronic
respiratory disease known as Non-Cystic
Fibrosis Bronchiectasis (NCFB), repeated
infections and fl are ups can make disease
management a challenge. NCFB
is characterized by symptoms including
cough, breathlessness and repeated
infections caused by mucus pools in
the airways that lead to bacterial growth
and even can cause some patients to
cough up blood. Th ere are limited treatment
options indicated for NCFB, making
the condition challenging to manage
for both patients and physicians.
For NCFB patient Christa, this burden
is all too familiar. Christa has battled
with the disease for eight years resulting
in a signifi cant impact to her daily life.
What started as pneumonia progressively
got worse and led to frequent exacerbations
that included severe coughing,
diffi culty breathing and dizziness. It took
several years of living with these symptoms
before she was offi cially diagnosed
with NCFB.
Christa is not alone, it is estimated that
in 2001, 110,000 people in the United
States are aff ected by NCFB, and data
suggests that this is a growing concern.
For some people with NCFB, the disease
is caused by an infection or another
underlying disease, but as many as
50 to 80% of diagnosed cases have no
known cause.
“Accurate and early diagnosis of NCFB
is important as the longer a patient has
the disease, the greater the likelihood
that it will be severe,” said Dr. Michael
Nelson, pulmonologist and CHEST
Foundation President. “Th e cycle of illness
for people with NCFB begins when
the body is unable to clear mucus from
the airways, leading to bacterial growth
and chronic respiratory infection. Next,
infl ammation may occur which can
increase airway damage and cause the
airways to expand, which in turn magnifi
es the diffi culties with clearing mucus.”
Th e unpredictability of Christa’s fl areups
has become a major burden in her
day-to-day life. For NCFB patients, fl areups
can lead to reduced lung function,
hospitalization and an increased risk of
death. Furthermore, during an exacerbation
of NCFB, patients experience an
increase in daily symptoms that can persist
for weeks. Beyond the physical symptoms
of the disease, research shows that
people with NCFB may experience an
impact on their quality of life both psychologically
and socially. Symptoms can
contribute to feelings of isolation for
people suff ering from this disease, leading
to an avoidance of activities they
enjoy.
“It’s diffi cult for people to fully understand
how much living with NCFB
aff ects not only my daily life, but any
plans I hope to pursue in the near or distant
future,” said Christa. “I make plans
and I can’t go through with them because
I never know when I’m going to have
another fl are-up or end up in the emergency
room. Th ere have been times I
have had to miss activities that are very
important to me.”
People looking for information on
NCFB, resources on how to discuss the
disease with family or questions to ask
a physician can visit https://foundation.
chestnet.org
Courtesy BPT