Living with Pure red-cell aplasia
A rare bone marrow condition in which too few red blood cells are made, causing anemia.
Understanding Pure red-cell aplasia
Red blood cells carry oxygen around the body. With fewer of them, people may feel tired and look pale. A rare form that is present from birth is called Diamond Blackfan syndrome, which is inherited and may involve other physical differences.
Signs & symptoms
Symptoms vary from person to person. GARD says they may include:
- Tiredness (fatigue)
- Low energy (lethargy)
- Pale skin
- Anemia (low red blood cells)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute
- 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 Autoimmune Association 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
PRCA has many causes, including some medicines, infections, pregnancy, kidney failure, thymomas, autoimmune disease like lupus, blood cancers, and solid tumors. In many cases the cause is unknown.
Also known as: prca; primary red cell aplasia; pure red cell anemia; pure red cell aplasia; pure red cell aplasia, acquired; red cell aplasia
Patient organizations
- Autoimmune AssociationPure red-cell aplasia · United States
- Global Autoimmune InstitutePure red-cell aplasia · United States
You are more than your diagnosis
Perspectives from people navigating life with Pure red-cell aplasia.
Explore research for Pure red-cell aplasia
Explore actively recruiting Pure red-cell aplasia studies with HealthSpark.
Find actively recruiting studies for Pure red-cell aplasia 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Pure red-cell aplasia studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Pure red-cell aplasia
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Pure red-cell aplasia experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.