Living with Primary myelofibrosis
A blood condition in which scar tissue builds up in the bone marrow so it cannot make enough healthy blood cells, mostly diagnosed from age 50 to 80.
Understanding Primary myelofibrosis
Most people have no symptoms at first. Later there can be too few red blood cells, white blood cells and platelets. Anemia can cause extreme tiredness or breathlessness, fewer white cells can cause more infections, and fewer platelets can cause easy bruising or bleeding. The spleen and liver may begin to make blood cells and become enlarged. It is most commonly diagnosed in people aged 50 to 80.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tiredness (fatigue) and shortness of breath
- Low red blood cells (anemia)
- Low platelets and easy bruising
- Enlarged spleen or liver
- Fever, night sweats and bone pain
- Pale skin
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 describes how scar tissue in the bone marrow disrupts blood cell making. It doesn't describe a cause for this condition yet.
Also known as: agnogenic myeloid metaplasia; aleukemic myelosis; amm; bone marrow fibrosis; chronic idiopathic myelofibrosis; cimf
Patient organizations
- Aplastic Anemia and MDS International FoundationPrimary myelofibrosis · United States
- MPN Research FoundationPrimary myelofibrosis · 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 Primary myelofibrosis.
Explore research for Primary myelofibrosis
Explore actively recruiting Primary myelofibrosis studies with HealthSpark.
Find actively recruiting studies for Primary myelofibrosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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