Living with Adult pure red cell aplasia
A rare blood condition in which the bone marrow almost stops making red blood cells, causing severe anemia.
Understanding Adult pure red cell aplasia
White blood cell and platelet counts are normal, but the bone marrow almost completely lacks the cells that become red blood cells. It causes signs of severe anemia but not bleeding.
Signs & symptoms
Symptoms vary from person to person. GARD's summary says they include:
- Tiredness (fatigue)
- Lack of energy (lethargy)
- Pale skin (pallor)
- Trouble with physical exercise
- Shortness of breath with activity
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.
- 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 and Autoimmune Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists)
- Expert care
- Expert lists: Aplastic Anemia and MDS International Foundation, Autoimmune Association
- 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 this as an acquired condition, which means it develops after birth. It doesn't describe a specific cause.
Also known as: adult pure red-cell aplasia; primary acquired prca; primary acquired pure red cell aplasia; pure red-cell aplasia of adults
Patient organizations
- Aplastic Anemia and MDS International FoundationAdult pure red cell aplasia · United States
- Autoimmune AssociationAdult pure red cell aplasia · United States
You are more than your diagnosis
Perspectives from people navigating life with Adult pure red cell aplasia.
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