Living with Congenital analbuminemia
A rare inherited condition with little or no albumin, a blood protein, usually causing only a few mild signs such as tiredness and swelling.
Understanding Congenital analbuminemia
Albumin is the most common protein in blood plasma, yet people with CAA usually have only a few mild signs. They may lose fat tissue and have high cholesterol, which can lead to early artery and heart problems. Rarely, there can be too much blood clotting, weak bones or respiratory infections. It is more severe in the fetus or early infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tiredness (fatigue)
- Swelling (edema), including in the legs
- Loss of healthy fat tissue (lipodystrophy)
- Premature birth
- Small size for gestational age
- High cholesterol
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 ALB 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
It is caused by changes in the ALB gene. It is autosomal recessive, so a child inherits a changed copy from each parent.
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 analbuminemia.
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- Eligibility is confirmed by the study team
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