36 THE QUEENS COURIER • WELLNESS • SEPTEMBER 21, 2017 FOR BREAKING NEWS VISIT WWW.QNS.COM
wellness
Advocate for your care: Recognizing and
tracking symptoms of a rare blood cancer
Living with a rare disease can present
a unique set of challenges, as people
may experience symptoms for years
before receiving an accurate diagnosis.
Once diagnosed, it may be challenging to
locate a physician familiar with this rare
disease, or to even connect with other
patients facing the same diagnosis. For
patients with polycythemia vera, or PV, a
rare, chronic and progressive blood cancer
that aff ects approximately 100,000
people in the United States, recognizing
the symptoms of the disease can be even
more challenging because they can vary
over time and from patient to patient.
“Patients living with rare diseases don’t
always know what to ask their doctor
as they work to manage their disease,
where to turn for resources, or what
signs and symptoms to look for,” says
Ellen Ritchie, MD, Associate Professor
of Clinical Medicine at Weill Cornell
Medical College. “PV can develop slowly
and get worse over time. Its symptoms
can be hard to spot, so it’s critical that
those diagnosed with PV understand the
symptoms and discuss any changes with
their physician, as these symptoms may
be a sign that their disease is not under
control.”
Recognizing Symptoms
Th e symptoms of PV can sometimes be
diffi cult for patients and healthcare providers
alike to recognize. Some people living
with PV may be asymptomatic, having
no symptoms at all. Others could have
symptoms for years before receiving an
accurate diagnosis. While not a comprehensive
list, PV symptoms may include:
• Itching (especially aft er a warm shower)
• Dizziness
• Abdominal pain or discomfort
• Sweating (at night or during the day)
• Feeling of fullness, even when you haven’t
eaten
Approaches to Tracking
Symptoms
Th ere are many approaches to tracking
PV symptoms. Keeping a regular
diary to record symptoms or changes in
symptoms is one approach. Th ere are also
online trackers such as the PV Tracker
Tool that can help patients monitor their
PV symptoms. Th is tool can record previous
entries and compile those results for
sharing with your healthcare professional.
Beyond tracking symptoms, it’s important
to talk with your physician about your
symptoms and to be knowledgeable about
your disease.
What to Ask Your Physician
To ensure you have an informed conversation
with your healthcare professional,
come to all appointments prepared
with a list of questions, as well as a
rolling log of symptoms and any changes
in their severity experienced since
the last checkup. Possible questions you
may wish to ask your physician include:
1. What are my target blood counts,
and what are my actual blood counts?
• Hematocrit (volume of red blood cells)
• White blood cell count
• Platelet count
2. What is my treatment plan to keep
my PV under control?
“All people diagnosed with rare diseases
should advocate for their care and
take an active role in managing their
disease with their healthcare provider,”
says Dr. Ritchie. “It is important to
create a routine that not only includes
monitoring blood levels, but also recognizing,
tracking, and talking about
symptoms with a healthcare professional.”
For tools to help track PV symptoms
and additional tips on managing PV and
other MPNs, visit VoicesofMPN.com.
Courtesy BPT
Actor Finola Hughes and Dr. Ellen Ritchie discuss the symptoms of polycythemia vera