Living with Acquired polycythemia vera
A blood condition with too many red blood cells, which thickens the blood and raises the chance of clots.
Understanding Acquired polycythemia vera
People may also have extra white cells and platelets. The extra cells make the blood thicker, so clots are more likely. It usually develops around age 60 but can appear earlier. It may cause no symptoms early on. Some people have headaches, dizziness, ringing in the ears, vision changes, or itchy skin, and often have reddened skin. Other possible problems are an enlarged spleen, stomach ulcers, and gout.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Too many red blood cells (polycythemia)
- Headache and dizziness
- Fatigue
- Enlarged spleen
- Itchy skin and reddened skin
- Easy bruising and nosebleeds
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Aplastic Anemia and MDS International Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Aplastic Anemia and MDS International Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Aplastic Anemia and MDS International Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD lists autosomal dominant inheritance for this condition. It doesn't describe a specific gene in this record.
Also known as: acquired primary erythrocytosis; osler-vaquez disease; osler-vaquez syndrome; polycythaemia rubra vera; polycythemia rubra vera; polycythemia vera
Patient organizations
- Aplastic Anemia and MDS International FoundationAcquired polycythemia vera · United States
- MPN Research FoundationAcquired polycythemia vera · United States
- National Blood Clot AllianceAcquired polycythemia vera · United States
- Blood Cancer UnitedBlood or bone marrow disease · United States
- HealthTree FoundationBlood or bone marrow disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Acquired polycythemia vera.
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