What Is Polycythemia Vera? A Beginner’s Guide

Author: Voices of MPN

Polycythemia vera (polly-sigh-THEE-me-ah-VAIR-Ah), or PV, is a rare, chronic blood cancer in which your bone marrow produces too many blood cells. You may also have too many white blood cells and platelets (blood clotting cells) in your blood, but having too many red blood cells causes most of the problems associated with PV.

Learning that you or a loved one has PV can be scary and overwhelming at first. Why did this happen? What am I supposed to do? How will this affect me? Your mind may race with many big questions.

The first thing to know about PV is that you’re not alone. About 100,000 people in the United States currently have PV.

The following are some other key facts to know about PV. The more you learn, the better you’ll be able to work with your Healthcare Professional to help manage your condition—and the more confident you’ll feel about the journey ahead.

What Else Should I Know About PV?

PV is a type of rare blood cancer called a myeloproliferative neoplasm (MPN) in which a person’s body makes too many red blood cells, and sometimes, too many white blood cells and platelets.

When this happens, your blood tends to thicken, causing various symptoms. Thick blood can raise your risk for serious problems such as blood clots, which may lead to a heart attack or stroke. It’s important to discuss with your Healthcare Professional what things you can do to help manage your risk of complications.

Who Gets PV?

The exact causes of PV are not fully understood. Almost all patients with PV have changes in a certain gene (also known as a mutation). This mutated gene, called JAK2 (Janus-associated kinase 2), may play a role in PV, but it’s still unclear. Most patients don’t have a family history of the disease, but sometimes more than one family member has had PV.

Men are slightly more likely than women to get PV. And the average age is 60 to 65 years old. However, PV is a rare disease and is still being studied.

What Are the Signs & Symptoms of PV?

Common symptoms may include:

  • Feeling tired and/or short of breath
  • Headaches
  • Blurred vision
  • Itchy skin, especially after a warm shower or bath
  • Sweating
  • An enlarged spleen, which can cause pain under the left ribs or a feeling of fullness
  • Reddening areas of the skin
  • Burning or numbness in the feet

How Is PV Managed?

PV is a chronic condition, which means it lasts a long time and may never go away. PV is also a progressive disease. This means that it may advance or get worse over time. But there are things you can do to keep it from worsening too quickly.

Your Healthcare Professional may recommend several things to help manage your symptoms and to keep your red blood cells and other cells within a target range. Along the way, you’ll have regular blood tests to check your condition.

Other things that may help include:

  • Exercising, to promote good blood circulation
  • Quitting smoking, to help lower your risk for blood clots and heart attack
  • Tracking your symptoms and sharing your notes at each healthcare visit

Learning as much as you can about PV can help you feel empowered to take control of your health if your condition changes over time. Be sure to regularly evaluate your PV and don’t be afraid to ask questions. Remember, knowledge is power.

Ready to learn more about PV? To find more information and support resources, click here.

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