Wilson’s disease
Facts for Patients

What is Wilson’s Disease? 

Wilson’s disease is a rare condition you are born with. It makes copper build up in your body. Copper is a metal found in many foods. Too much copper can hurt your liver, brain, and eyes.
 

What Are the Signs of Wilson’s Disease?

You may get sick in childhood or early adult years. Everyone is different. Common signs include:

• Tiredness or yellow skin (from liver problems)
• Shaking hands or trouble walking
• Talking or swallowing problems
• Mood changes like depression or anger
• Trouble thinking clearly 
• Eye problems (copper rings in the eyes)
   

What Causes Wilson’s Disease?

Wilson’s disease is passed down from your parents. You must get one bad gene from your mother and one from your father. These genes stop your body from getting rid of extra copper. Over time, the copper builds up and causes damage.
 

How Do Doctors Know If You Have It?

Doctors use several tests:

• Blood test: to check a protein called ceruloplasmin and your liver health
• Urine test: collect your pee for 24 hours to measure copper levels
• Eye exam: to look for copper rings (called Kayser-Fleischer rings)
• Liver biopsy: a small piece of your liver is tested for copper
• Genetic test: checks for the Wilson’s gene

Sometimes, a brain scan (MRI) is also needed.
 

Is Wilson’s Disease Treatable? 

Yes! Wilson’s disease can be treated. If you start early and follow treatment, you can live a normal life.
 

What Medicines Are Used?

There are two main kinds:

1. Medicines that remove copper from your body

• Penicillamine
• Trientine

2. Medicines that block copper from food

• Zinc

You may need to take medicine every day for the rest of your life.

If your liver is badly damaged, a liver transplant may be needed.
 

What Foods Should I Avoid?

Some foods have a lot of copper. Try to eat less of these:

• Chocolate and cocoa products
• Nuts and seeds
• Organ meats such as liver, heart, and kidney
• Shellfish
• Dried fruit
• Mushrooms

Avoid cooking with copper pots or drinking tap water from copper pipes. Use filtered or bottled water if needed.
 

Should My Family Be Tested?

Yes. Wilson’s disease runs in families. Brothers and sisters of someone with Wilson’s should get tested. Ask your doctor about genetic testing for your family.
 

What Should I Do Now?

• Take your medicine every day
• Go to all your doctor visits
• Eat a low-copper diet
• Tell your family to get tested
  
   

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