Nick Jonas tribute sparks awareness of rare Wilsons Disease risks
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What makes Wilson’s Disease particularly dangerous is how silently it progresses. Copper buildup can begin in childhood, but symptoms may appear at any age.
Wilson’s Disease is a genetic disorder in which the body is unable to properly eliminate excess copper. (Image: Instagram)
Grief found a quiet, emotional expression on Instagram this week as Nick Jonas remembered someone he called family. Marking what would have been her 31st birthday, on April 3, the singer shared a childhood photograph with his close friend, photographer Maya Kibbel, someone he referred to as his sister.
Maya Kibbel passed away last month at the age of 30 after battling Wilson’s Disease, a rare inherited condition that often goes undiagnosed until significant damage has already occurred.
What Is Wilson’s Disease?
Wilson’s Disease is a genetic disorder in which the body is unable to properly eliminate excess copper.
Copper is an essential trace mineral that the body needs in small amounts. However, when it begins to accumulate—particularly in the liver, brain, and eyes—it becomes toxic.
In healthy individuals, the liver filters out excess copper and excretes it. But in people with Wilson’s Disease, this process is impaired 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 silently it progresses. Copper buildup can begin in childhood, but symptoms most commonly appear between the ages of 3 and 40—though they can develop at any stage of life, according to the Mayo Clinic.
By the time the disease is detected, the excess copper may have already caused significant damage to the liver, leading to conditions like hepatitis or cirrhosis. It can also affect the brain and nervous system, interfering with movement, speech, and mental function. In some cases, it may also trigger psychiatric symptoms, including depression and behavioural changes.
What Are the Symptoms?
The symptoms of Wilson’s Disease can vary widely, which is why it is often misdiagnosed. Early signs may be subtle, such as persistent fatigue or weakness, but as copper levels rise, more visible symptoms begin to appear.
Doctors highlight that liver-related signs can include yellowing of the skin and eyes, swelling in the abdomen, and unexplained liver dysfunction.
Neurological symptoms may develop gradually, leading to tremors, difficulty in coordination, slurred speech, or muscle stiffness. Mental health changes—such as mood swings or depression—are also commonly reported.
One of the most recognisable clinical signs is the presence of Kayser-Fleischer rings—brownish 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. As per guidance from the National Health Service and other global health bodies, treatment focuses on reducing copper levels in the body and preventing further accumulation.
Doctors typically 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 like shellfish, nuts, chocolate, and certain mushrooms. Since the condition is lifelong, 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 that are high in copper,” according to US National Institute of Diabetes and Digestive and Kidney Diseases. “People who have Wilson disease need lifelong treatment.”
In advanced cases where liver damage is severe, a liver transplant may be the only viable option.
Why Awareness Matters
Wilson’s Disease remains rare, but its impact can be severe if overlooked. Because its symptoms overlap with many other conditions, diagnosis is often delayed—sometimes until irreversible damage has occurred.
Health experts stress that early detection through screening and awareness can significantly improve outcomes. With timely treatment, many patients are able to lead normal, healthy lives.
April 04, 2026, 20:31 IST
