Living with Congenital dyserythropoietic anemia, type III
A rare inherited blood condition with mild to moderate anemia caused by oddly large red blood cell precursors in the bone marrow.
Understanding Congenital dyserythropoietic anemia, type III
Bone marrow tests show unusually large immature red blood cells with more than one nucleus. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Anemia (low red blood cells or hemoglobin)
- Tiredness (fatigue)
- Red blood cells of unequal size
- Larger-than-usual red blood cells
- Oddly shaped 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
Specialists who may be involved include blood and bone marrow specialists and genetic specialists.
- 3Consider genetic testing
Changes in KIF23 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
Changes in the KIF23 gene are listed. GARD lists both autosomal dominant and autosomal recessive inheritance.
Also known as: anemia with multinucleated erythroblasts; cda iii; cda type 3; cda type iii; cdan3a; congenital dyserythropoietic anemia type 3
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital dyserythropoietic anemia, type III.
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