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What makes Wilson's disease particularly dangerous is how quietly it progresses. Copper buildup can begin in childhood, but symptoms can appear at any age.
Wilson's disease is a genetic disorder in which the body cannot properly eliminate excess copper. (Image: Instagram)
Grief found quiet, emotional expression on Instagram this week when Nick Jonas remembered someone he called family. On the occasion of what would have been her 31st birthday, on April 3, the singer shared a childhood photo with her close friend, photographer Maya Kibbel, someone she referred to as her sister.
Maya Kibbel passed away last month at the age of 30 after battling Wilson's disease, a rare inherited disease that often goes undiagnosed until significant damage has already been done.
What is Wilson's disease?
Wilson's disease is a genetic disorder in which the body cannot properly eliminate excess copper.
Copper is an essential trace element that the body needs in small quantities. However, when it begins to accumulate (particularly in the liver, brain and eyes) it becomes toxic.
In healthy people, the liver filters excess copper and excretes it. But in people with Wilson's disease, this process is affected due to a genetic mutation, leading to a gradual buildup over time.
Why is it dangerous?
What makes Wilson's disease particularly dangerous is how quietly it progresses. Copper buildup can begin in childhood, but symptoms most often appear between ages 3 and 40, although they can develop at any stage of life, according to the Mayo Clinic.
By the time the disease is detected, excess copper may have already caused significant damage to the liver, leading to conditions such as hepatitis or cirrhosis. It can also affect the brain and nervous system, interfering with movement, speech, and mental function. In some cases, it can also trigger psychiatric symptoms, such as depression and behavioral changes.
What are the symptoms?
The symptoms of Wilson's disease can vary widely, which is why it is often misdiagnosed. The first signs may be subtle, such as persistent fatigue or weakness, but as copper levels increase, more visible symptoms begin to appear.
Doctors note that liver-related signs can include yellowing of the skin and eyes, swelling of the abdomen, and unexplained liver dysfunction.
Neurological symptoms may develop gradually and cause tremors, difficulty coordinating, slurred speech, or muscle stiffness. Changes in mental health, such as mood swings or depression, are also frequently reported.
One of the most recognizable clinical signs is the presence of Kayser-Fleischer rings: brown or greenish rings around the cornea, caused by copper deposits in the eyes.
Can it be cured?
While Wilson's disease is not curable, it is highly treatable and manageable, especially when diagnosed early. According to guidelines from the NHS and other global health bodies, treatment focuses on reducing copper levels in the body and preventing further build-up.
Doctors often prescribe medications that help remove excess copper or block its absorption. Over time, patients may also need to follow a low-copper diet, avoiding foods such as shellfish, nuts, chocolate, and certain mushrooms. Since the condition lasts a lifetime, treatment must be continued indefinitely.
“In many cases, treatment can improve or prevent symptoms and organ damage. Doctors may also recommend changing your diet to avoid foods high in copper,” according to the U.S. National Institute of Diabetes and Digestive and Kidney Diseases. “People with Wilson's disease need lifelong treatment.”
In advanced cases where liver damage is severe, a liver transplant may be the only viable option.
Why awareness is important
Wilson's disease remains rare, but its impact can be serious if it is missed. Because its symptoms overlap with those of many other conditions, diagnosis is often delayed, sometimes until irreversible damage is done.
Health experts highlight that early detection through screening and awareness can significantly improve outcomes. With timely treatment, many patients can lead a normal, healthy life.
April 4, 2026, 20:31 IST
