Wilson’s Disease Patient Education

What is Wilson’s Disease?

Wilson’s disease is a condition where too much copper builds up in the body. Normally, your liver gets rid of extra copper, but with Wilson’s disease, the liver can’t do this well. The copper builds up in your liver, brain, and other organs, which can cause problems.

Causes and Risk Factors

Wilson’s disease is caused by a change in a gene you inherit from your parents. This means it runs in families. It usually starts in young people, often before age 40. If someone in your family has Wilson’s disease, you may need to get tested.

Signs and Symptoms

Early signs can be hard to notice but may include:

Tiredness and weakness
Stomach pain or nausea
Yellow skin or eyes (jaundice)
Easy bruising or bleeding
Mood changes, such as feeling sad or angry
Trouble speaking or moving

Later, you might see:

Tremors (shaking) or muscle stiffness
Problems with coordination and walking
Problems with memory or thinking clearly
Eye changes called “Kayser-Fleischer rings” — a greenish ring around the colored part of your eye

Complications if Untreated or If You Don’t Follow Treatment

If Wilson’s disease is not treated, the copper buildup can damage your liver, brain, and other organs. This can cause liver failure, mental health problems, or serious movement problems. It can even be life-threatening.

Treatment and Self-Care Measures

Treatment helps your body get rid of extra copper and prevents more from building up. This usually includes:

Medications that remove copper from your body or stop it from being absorbed.
Diet changes to avoid foods high in copper.
Regular check-ups with your doctor and lab tests.

Common Medications

Chelating agents (like penicillamine or trientine): These help remove copper from your body. Side effects can include skin rash, upset stomach, or low blood counts.
Zinc: This medicine blocks copper from being absorbed from food. Side effects may include stomach upset.

Always take your medicine as your doctor tells you. Do not stop without talking to your healthcare provider.

Dietary Needs

You should avoid foods high in copper, such as:

Shellfish (shrimp, crab, lobster)
Nuts and chocolate
Mushrooms
Liver and other organ meats
Some multivitamins with copper

Ask your doctor or dietitian to help make a meal plan that is safe for you.

Lifestyle Changes

Take your medicine every day.
Keep all your doctor appointments and lab tests.
Avoid alcohol, which can hurt your liver more.
Tell your doctor if you feel worse or have new symptoms.

Safety Considerations

Tell all your healthcare providers that you have Wilson’s disease.
Avoid taking extra vitamins or supplements without checking with your doctor.
If you have side effects from medicine, call your doctor.
If you feel very sick or confused, get help right away.

Prevention and Maintenance Tips

Stay on your medicine and diet.
Get regular blood and urine tests to check copper levels.
Watch for new symptoms and report them quickly.
Keep a health journal to track your symptoms and medications.

When to Call for Help

Situation

Who to Call

Mild symptoms like tiredness or mild stomach upset

Home Health Agency or Doctor

New or worsening symptoms like muscle shaking, mood changes, jaundice

Doctor

Severe symptoms like confusion, severe stomach pain, difficulty breathing, sudden weakness or inability to move

Emergency Room

Patient Homework / Assessment

Instructions: Read each statement carefully. Choose True or False. If the statement is false, write the correct information.

True or False: Wilson’s disease causes your body to keep too much copper.
True or False: Wilson’s disease can be cured by surgery.
True or False: You should avoid eating shellfish if you have Wilson’s disease.
True or False: Taking your medicine every day helps prevent damage to your liver and brain.
True or False: Drinking alcohol is safe for people with Wilson’s disease.
True or False: You should tell your doctor about any side effects from your medicine.
True or False: Copper builds up mostly in your kidneys with Wilson’s disease.
True or False: Tremors and muscle stiffness can be signs of Wilson’s disease.
True or False: You do not need regular blood tests after starting treatment.
True or False: Zinc medicine helps stop copper from being absorbed from food.
True or False: You should take extra vitamins that contain copper.
True or False: Mood changes like depression can happen with Wilson’s disease.
True or False: You only need to take medicine for Wilson’s disease until you feel better.
True or False: Kayser-Fleischer rings can be seen in the eyes of some patients.
True or False: If you feel confused or very sick, you should go to the emergency room immediately.
True or False: Avoiding mushrooms and nuts is recommended.
True or False: Wilson’s disease usually runs in families.
True or False: You should tell your healthcare providers you have Wilson’s disease before surgery.
True or False: You can stop your diet changes once your copper levels are normal.
True or False: Regular doctor visits are important for managing Wilson’s disease.

Individualized Questions for You

What is your current medication for Wilson’s disease?
Have you noticed any side effects from your medication?
When was your last blood or urine test to check copper levels?
Do you know which foods you need to avoid?
Have you experienced any new symptoms like shaking, mood changes, or yellowing of your skin?
How well do you feel you are following your diet and medicine plan?
Have you had any recent problems with bruising, bleeding, or confusion?
Do you have a support system to help you remember your medicine and appointments?