Living with Wilson disease
Information, shared experiences and research connections for people living with Wilson disease and those who support them.
Understanding Wilson disease
It is caused by changes in the ATP7B gene; symptoms usually start between ages 6 and 45, most often in the teen years, and people need lifelong treatment.
Signs & symptoms
Signs often involve the liver, movement or mood, and can look different depending on age.
- Tremor, clumsiness or trouble walking
- Changes in speech
- Yellowing of the skin or eyes (jaundice)
- A colored ring around the edge of the cornea (Kayser-Fleischer ring)
- Depression, anxiety or personality changes
- Joint or bone pain and muscle weakness
Tell your care team about new or changing symptoms.
Diagnosis
- 1History and exam
Doctors review your medical and family history and do a physical exam.
- 2Eye, blood and urine tests
A slit-lamp eye exam, blood tests such as ceruloplasmin and copper, and a 24-hour urine copper test look for signs of extra copper.
- 3More tests if needed
If results are unclear, doctors may suggest genetic testing, a liver biopsy, or brain imaging for people with nervous system symptoms.
Care & treatment
- Treatment
- Doctors treat Wilson disease with medicines called chelating agents or with zinc.
- Monitoring
- Treatment is lifelong, with regular follow-up to manage symptoms and help prevent organ damage.
- Your plan
- If severe liver failure develops, a liver transplant may be needed, so ask your team what fits your situation.
Discuss benefits, risks and follow-up with your care team.
Everyday life
Small habits can make each visit more useful.
- Ask your care team whether to limit high-copper foods such as chocolate, liver, mushrooms, nuts and shellfish.
- Keep a list of your medicines, when you take them and any missed doses.
- Keep copies of copper and liver test results so changes can be compared over time.
You are more than your diagnosis
Perspectives from people navigating life with Wilson disease.
Explore research for Wilson disease
Explore actively recruiting Wilson disease studies with HealthSpark.
Find actively recruiting studies for Wilson disease with HealthSpark. Share your city to explore research near you.
- Phase 3 studies first, with nearest research center
- Study information from ClinicalTrials.gov
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Wilson disease 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 Wilson disease
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 Wilson disease 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.