Nearly 4 in 10 had lingering symptoms months after infection, with bigger hits to sleep, fatigue and mental health.

Key points

• In a German survey of 51 adults with Wilson disease (a rare copper‑metabolism disorder), 39.2% met the study’s definition of long COVID (LC).    
• The LC group reported worse quality of life, more sleep problems, fatigue, depression, anxiety, stress and cognitive complaints than before COVID‑19.  
• The authors urge closer follow‑up and supportive therapies (e.g., physiotherapy, occupational therapy, psychological/neurological evaluation) after infection.  

A new study in JIMD Reports looked at how long COVID affects people living with Wilson disease (WD)—a rare condition that causes copper to build up in the liver, brain and other organs. Researchers surveyed 51 patients (median age 39; 56.1% female) treated at a German center; most had primarily hepatic disease and had been on treatment for years. None required hospital care for their acute COVID infection, and assessments were conducted a median 10.9 months after illness.    

The team defined long COVID as new, moderately severe symptoms—such as breathlessness, chest pain, fatigue, brain fog, reduced exercise capacity or concentration problems—or a worsening of pre‑existing symptoms that persisted to the time of the survey. Using this definition, 20 of 51 patients (39.2%) were classified as having LC—well above the authors’ cited ~4% estimate for the general population.  

What they found

Compared with their pre‑COVID baseline, people with WD reported significantly worse physical quality of life, sleep quality and fatigue overall. In those with LC, validated questionnaires showed broad, significant declines across mental‑health and symptom domains: SF‑12 (quality of life), PSQI/ISI/Epworth (sleep), Chalder Fatigue Scale, PHQ‑9 (depression), GAD‑7 (anxiety), PSS (stress) and FLei (subjective cognitive complaints). By contrast, the “recovered” group showed little change beyond fatigue.    

The most common LC symptoms were concentration problems (60%), fatigue (55%), reduced exercise capacity (50%), shortness of breath (40%), chest pain (20%) and brain fog (15%)—all significantly more frequent than in patients who recovered.  

Why it matters

People with WD can already face neurological and psychiatric challenges; persistent post‑COVID symptoms may worsen day‑to‑day functioning and threaten treatment adherence, which is crucial for controlling copper levels. The authors recommend close monitoring and multidisciplinary support—including physical and occupational therapy and psychological/neurological care—when WD patients report ongoing symptoms after COVID‑19.  

Caveats

The study is small, relied on a retrospective self‑administered survey, and cannot fully separate the effects of infection from broader pandemic stressors (e.g., isolation or financial strain). Larger, prospective studies are needed to confirm these findings and to see how LC might affect liver disease progression, especially in patients with cirrhosis.  

Bottom line for readers

If you have Wilson disease and had COVID‑19, talk with your care team if you’re experiencing ongoing fatigue, sleep problems, breathlessness, brain fog or mood changes. Early support and tailored rehabilitation may help—and may also protect the long‑term management of Wilson disease.  

Source: Mohr I, et al. JIMD Reports (2025). See Table 1 for patient characteristics and timing; Methods describe the validated assessments used.    

Mohr, I., Brand, M., Weber, C., Langel, A., Langel, J., Michl, P., Leidner, V. Y., Olkus, A., Köhrer, S., & Merle, U. (2025). Mental and Physical Health in Wilson Disease Patients With SARS-CoV-2 Infection and Relevance of Long-COVID. JIMD reports, 66(3), e70021. https://doi.org/10.1002/jmd2.70021

Editor’s note: This article is for information only and is not a substitute for professional medical advice.