Open Menu
Woman’s face shown through puzzle grid with icons introducing PV resources and support
Woman’s face shown through puzzle grid with icons introducing PV resources and support
Book icon representing educational resources

WHO
CAN
RELATE?

Speech bubble icon representing shared experiences and patient perspectives

RESOURCES to help you take charge of PV

You’re not alone on your journey with polycythemia vera (PV). We’re here to help with educational tools, real-life perspectives from others living with PV, and more.
Guides and Tools Podcast and Videos Lifestyle Tips Glossary Advocacy Groups

Downloadable guides and tools

Cover of the Piece Together PV Guide

Piece together PV guide
Find information about PV symptoms and risks, plus other resources to help you take charge of PV.

Download

Doctor discussion guide
Make every doctor visit count with this discussion guide designed to help you speak up and set goals that matter to you.

Download
Cover of Your Guide to Blood Tests

Your guide to blood tests
This helpful guide breaks down the components of blood tests and how they may impact your treatment plan.

Download

The PV Pod:
Stories From the Marrow

This podcast empowers listeners with critical education, the latest scientific updates, and voices from the community, including people with PV, caregivers, doctors, and more.
Listen now

Pieces of PV video series

Hear others living with PV share hope, inspiration, and practical pieces of advice on everything from advocating for yourself to finding community support.
Making Sense of All 3 Blood Counts
Making Sense of All 3 Blood Counts
Learn about the importance of managing all 3 blood counts in PV and hear how others worked with their doctors to help keep their numbers in check.
Pivotal PV Moments
Pivotal PV Moments
From taking charge of researching and educating themselves about the disease to joining supportive communities of people with PV, hear others share the pivotal moments where the pieces of PV started to come together for them.
Voices of Experience Thriving with PV
Voices of Experience: Thriving With PV
People who have been living with PV for years reflect on their experiences and share tips and inspiration for those who have been diagnosed more recently.
Managing PV on Your Terms
Managing PV on Your Terms
One long-time PV patient shares powerful advice for taking control of your condition, understanding your options, and making sure you have the right team in place for your personal journey with PV.
See More

Make connections at live events

Logo for PV In Focus – event series focused on education, support, and connection for people living with polycythemia vera

Join us for inspirational in-person events featuring educational speakers, community-building activities, and stories of hope for anyone living with or caring for someone with PV.

Register now

Tips for living well with polycythemia vera

We know that staying on top of PV can sometimes take a toll. Here are some tips to help you practice self-care, minimize symptoms, and make living well with PV possible.

Take care of your skin
Because PV can cause dry or itchy skin, it’s important to take special care of your body’s largest organ:

  • Take shorter or less frequent showers or baths, and use a gentle soap
  • Avoid hot tubs, heated whirlpools, and hot showers or baths
  • Keep skin moist and try not to scratch because it can damage the skin

Get your body (and blood!) moving
Exercise promotes good blood flow, which can help decrease your risk of blood clots. Even moderate exercise, such as walking, yoga, or stretching, can help improve blood circulation.
Be sure to talk to your doctor before starting an exercise program to help determine what activity level is safest for you.

Take extra care in extreme temperatures
Because PV can cause poor blood flow, it can also increase your risk of injury from hot and cold temperatures.

  • In cold weather, always wear warm clothing, particularly on your hands and feet
  • In hot weather, protect yourself from the sun and be sure to drink plenty of liquids

Check for sores
Poor circulation can make it harder for sores to heal, particularly on your hands and feet. Inspect your hands and feet regularly and tell your doctor about any sores.

Stay away from tobacco
Using tobacco can cause your blood vessels to narrow, increasing the risk of heart attack or stroke due to blood clots. Because PV also increases this risk, it’s even more important to avoid smoking.

Avoid places with low oxygen levels
Living at high altitudes, skiing, or spending time in the mountains can reduce the oxygen levels in your blood even further.

Key terms to help you make sense of PV

Navigating a PV diagnosis and treatment can be overwhelming. Learning the lingo doesn’t have to be. Explore a list of important terms so you can take control of PV with confidence.

Acute myeloid leukemia (AML)
A rare, fast-growing cancer that affects your bone marrow and blood, and can spread to other parts of the body.
Anemia
A condition when you don’t have enough healthy red blood cells to carry oxygen throughout your body. 
Blood cells
Types of cells that carry oxygen and nutrients to support various functions in the body. They begin as stem cells in the bone marrow and mature into red blood cells, white blood cells, and platelets.
Bone marrow
The soft, spongy tissue inside bones that is responsible for making billions of new blood cells every day.
Cardiovascular events
Incidents that damage the heart and blood vessels, such as a heart attack or stroke.
Chemotherapy
A treatment that uses drugs to stop the growth of cancer cells. It may be given alone or with other treatments.
Complete blood count (CBC)
A blood test that measures your red and white blood cells, platelets, hemoglobin, and hematocrit.
Complete hematologic response (CHR)
When all 3 blood cell counts (red, white, and platelets) have returned to normal levels and you haven’t required a phlebotomy in the past 3 months.
Comprehensive disease control
When all blood cell counts and spleen size have returned to normal and there is an absence of thromboembolic events, typically after treatment for a blood-related condition.
Efficacy
The ability of a therapy to produce the desired result on a disease or symptom.
Hematocrit (HCT)
The percentage of red blood cells in your total blood volume.
Hemoglobin (HB or HBG)
A protein in red blood cells that carries oxygen to your organs.
Hyperviscosity
When the blood thickens and increases in volume so much that it doesn’t flow through your blood vessels properly.
Immunotherapy
A type of treatment that stimulates the body’s immune system to help fight cancer, infection, and other diseases.
Interferon
A protein that helps your immune system fight certain infections and diseases, such as cancer.
JAK2
A gene that makes a protein to help control the number of red blood cells, white blood cells, and platelets made in the bone marrow.
JAK2 mutation
A rare mutation in the JAK2 gene that can cause the body to make too many blood cells.
Leukemia
A type of cancer of the body’s blood-forming tissues that causes the production of large numbers of abnormal white blood cells.
Leukopenia
A low white blood cell (leukocyte) count.
Mutation
Any change in the DNA sequence of a cell. It can be inherited from your parents or caused by external factors, such as chemicals in your environment.
Myelodysplastic syndrome (MDS)
A rare group of cancers that happen when the bone marrow doesn’t make enough healthy blood cells. Sometimes, MDS can turn into acute myeloid leukemia (AML).
Myelofibrosis (MF)
A rare type of cancer that causes scarring in the bone marrow, making it harder for the bone marrow to produce healthy blood cells.
Myeloproliferative neoplasms (MPNs)
A group of cancers that start in the bone marrow, where blood cells are made.
Phlebotomy (PHL)
A procedure used to treat certain blood disorders by removing extra red blood cells and decreasing blood volume.
Platelets
Small cell fragments made in the bone marrow that help form clots and stop or prevent bleeding.
Red blood cells (RBC)
A common type of blood cell that carries oxygen from the lungs to all parts of the body.
Spleen
The spleen is an organ in the abdomen that stores and filters blood.
Stem cells
A special type of cell that can develop into many different types of cells in the body.
Thrombocytopenia
A condition that occurs when your bone marrow doesn’t make enough platelets (thrombocytes). It can result in easy bruising or bleeding.
Thromboembolic events
Situations where a blood clot breaks loose, travels through the bloodstream, and blocks another blood vessel.
Thrombotic events
The formation of a blood clot in a blood vessel or the heart, which can block blood flow.
White blood cells (WBC)
A type of blood cell made in the bone marrow that helps the body fight infections and disease.
Close X

Take care!

You’re about to leave PieceTogetherPV.com to visit a PV advocacy group website that is not operated by PharmaEssentia.

Visit advocacy site
Stay here