FOR BREAKING NEWS VISIT WWW.QNS.COM MARCH 1, 2018 • HEALTH • THE QUEENS COURIER 27
health
Revealing the hidden impact of a rare blood cancer
Barbara didn’t realize that she had
the power to inspire so many people
across the rare disease community and
beyond with her story. As the focal point
of a newly released documentary fi lm,
“Beyond Blue,” Barbara’s experience
shines a light on how people living with
a rare disease may experience unseen
symptoms, or, as Barbara puts it, “the
80-pound invisible blanket” that she carried.
Academy Award winning fi lmmaker
in the Documentary Short Subject category,
Cynthia Wade, director of “Beyond
Blue,” has spent her career bringing previously
untold stories to life through documentary
fi lms. Th is latest fi lm, the fi rst
in a series of fi lms being released this year,
reveals some of the challenges people may
face living with myeloproliferative neoplasms,
or MPNs, a group of rare, chronic
blood cancers, and the dramatic impact
these blood cancers can have on patient
lives, their family, friends and caregivers.
“Th e key to making a strong documentary
fi lm is to fi nd a unique, emotionally
arresting story that is supported by strong
visual imagery,” said fi lmmaker Cynthia
Wade. “I love fi nding unknown and little
known stories, like the hidden challenges
people face living with a rare disease,
and bringing these true stories to
light.
“Th e series addresses stories of fear,
persistence, loneliness and hope,” Wade
continued. “’Beyond Blue’ provides an
intimate look into Barbara’s experience,
her struggles and ultimately the lessons
that she has learned through her battle.”
It is estimated that 200,000 people in
the United States are aff ected by MPNs,
which include three rare blood cancers -
polycythemia vera (PV), essential thrombocythemia
(ET) and myelofi brosis (MF).
MPNs are the result of the abnormal
development and functioning of bone
marrow cells that produce the body’s
blood cells. Th ese progressive cancers can
strike at any age, although they are more
commonly diagnosed in adults over the
age of 60. Barbara was only 32 when she
was diagnosed with PV, more than 20
years ago.
“Before I was diagnosed, I was just living
my life, but I just knew that something
wasn’t right,” said Barbara, PV patient
and MPN advocate. “When my doctor
sent me to a cancer center for the fi rst
time to get evaluated further, my heart
sank. I didn’t want this to be my story.”
Now 54 and an advocate helping others
with MPNs, Barbara recalls that she
had never even heard of PV when she was
fi rst diagnosed. PV, the most prevalent of
these three MPNs, is marked by the overproduction
of red blood cells, which causes
the blood to thicken, resulting in an
increased risk of blood clots that may lead
to a heart attack or stroke.
“For patients with MPNs, it can be challenging
to recognize the symptoms of
their disease, as symptoms can vary over
time and from patient to patient,” said
Dr. Hugo Fernandez, chair and medical
director of Moffi tt Malignant Hematology
& Cellular Th erapy, Memorial Healthcare
System, and Barbara’s treating physician.
“It is important for patients and physicians
to work closely together to track
evolving symptoms, assess trends and
changes in their disease, and talk through
a treatment approach.”
In a small number of people, like
Barbara, PV can transform into MF
over time. For people with MF, the
least common but most serious of these
three MPNs, abnormal bone marrow
cells cause the body to make too many
or too few blood cells. Th is can lead
to a buildup of scar tissue in the bone
marrow, which interferes with the normal
production of blood cells and leads
to an enlarged spleen. MF symptoms
include pain or discomfort in the abdomen
under the left ribs, a feeling of being
full without overeating, fatigue, itching
and night sweats.
Aft er Barbara’s PV transformed to
MF, she received a stem cell transplantation.
Stem cell transplantation is the
only potential cure for MF, but it also
carries a risk of life-threatening infections
and other side eff ects. Th e documentary
fi lm captures moments from
Barbara’s unique journey and the life lessons
she has learned along the way. “I’m
hoping this fi lm will help others understand
the many diff erent aspects of living
with a rare disease, tell them about what
might be invisible to the eye and empower
patients to have better conversations
with their doctors and their loved ones in
an eff ort to live their best lives and live out
their own stories,” said Barbara.
To watch “Beyond Blue,” directed by
Cynthia Wade and created in partnership
with Incyte Corporation, or to learn more
about MPNs, visit www.VoicesofMPNs.
com/documentaries.
Courtesy BPT