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Wilson disease is a rare and progressive genetic condition in which the body has weakened ability to remove excess copper. Copper is an important mineral required in the body for processes such as making blood vessels, keeping nerves cells healthy and supporting your immune system.
Copper is not produced by the body but absorbed from a person’s diet and only required in small amounts. The copper that isn’t needed is naturally removed by the liver. For people living with Wilson disease, their liver cannot fully eliminate the excess copper, leading to increased copper in the blood and accumulating into organs and tissue throughout the body.
Initial signs can start with increased liver enzymes without symptoms, followed by enlargement of the liver and potentially liver damage requiring a liver transplant. Patients may also experience tremors, speech impairments, psychiatric issues, mild cognitive difficulties and other neurological symptoms. If treatment is delayed, disease progression can be serious so it is important to work with your healthcare team to determine the right management plan.
A doctor can diagnose Wilson disease using a combination of tests and/or procedures such as:
Early diagnosis and management may help reduce the risk of worsening organ damage.
Although the disease is present at birth, symptoms may not appear until later in life. The average age of diagnosis is between the ages of 5 and 35 years old.
Average time from symptoms starting to a diagnosis is often 2 or more years.
Worldwide, ~1 in 30,000 to ~1 in 67,000 people are living with Wilson disease.
What are the current goals of disease management?
Wilson disease management may consist of taking lifelong medication that helps the body get rid of excess copper or prevents it from being absorbed, as well as following a low-copper diet. A combination of both is recommended to remove excess copper build-up, control symptoms and prevent disease progression. Regular monitoring is also needed to ensure your copper levels are in the right range. Regular laboratory tests, physical exams and neurological evaluations are key to staying as healthy as possible.
It’s important to adhere to your management plan and proactively keep your healthcare team up-to-date on your symptoms. Your doctors can then help you make any adjustments that might be needed.
By taking action, adhering to your prescribed management plan, and proactively monitoring changes in your body, you may be able to slow the progression of current or prevent the development of new symptoms of Wilson disease.
Disease management consists of taking medication that gets rid of excess copper or prevents it from being absorbed, as well as following a low-copper diet. A combination of both is recommended to control copper buildup and symptoms. Regular monitoring is also part of a complete treatment plan.
It’s important to adhere to your treatment plan and to proactively keep your healthcare team up to date on your progress. That way, you can help them track your symptoms to see if your treatment regimen needs any changes.
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