Living with Dubin-Johnson syndrome
An inherited liver condition that mainly causes jaundice (yellow skin and eyes), usually starting in the teens or early adulthood.
Understanding Dubin-Johnson syndrome
In most people, jaundice begins in the teen years or early adulthood and is the only feature. Some also have weakness, mild belly pain, nausea, or vomiting. Deposits build up in the liver and make it look black on imaging, but they do not seem to harm how it works. Rarely, jaundice begins soon after birth with an enlarged liver and low bile flow, but the liver problems go away as the child gets older.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Jaundice (yellow skin and eyes)
- Changes in urine color
- Liver differences on tests or imaging
- Mild belly pain (less common)
- Tiredness (less common)
- Enlarged liver (less common)
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 digestive system specialists and genetic specialists.
- 3Consider genetic testing
Changes in ABCC2 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
- Digestive system specialists (gastroenterologists); 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
GARD says changes in the ABCC2 gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: black liver-jaundice syndrome; chronic idiopathic jaundice; chronic idiopathic jaundice with pigmented liver; djs; djs - dubin-johnson syndrome; dubin johnson syndrome
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 Dubin-Johnson syndrome.
Explore research for Dubin-Johnson syndrome
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