Djamilla, a 20-year-old patient diagnosed with a functional neurological disorder, has spent five months in an euthanasia process while lying in a nursing home where she can no longer move, but can still blink, talk, and give slight nods. According to figures from Stichting FNS, at least 85,000 people live with functional neurological disorders (FNS) in the Netherlands, with approximately 3,000 severely affected patients.
Understanding Functional Neurological Disorders and Diagnosis Barriers
Functional neurological disorders involve a disruption in how the brain and body work together. According to neuropsychologist and professor Erik Scherder, the condition can stem from a physical or psychological trauma, though sometimes no clear trigger exists. Because the disorder does not always show up on standard brain scans, patients have historically faced misunderstanding.
Djamilla’s medical journey began when she was ten years old. Her symptoms fluctuate, cycling through periods of improvement followed by relapses that demand extensive rehabilitation. After cycling through multiple specialized care tracks that failed to alleviate her symptoms, she described her current condition plainly: “I am now a house plant,” she stated in a prior interview, adding that she has no confidence that a treatment will come.
Systemic Shortfalls in Multidisciplinary FNS Care
Severe FNS cases require a coordinated, multidisciplinary approach to guide patients toward appropriate rehabilitation pathways. Yet, according to Professor Scherder, patients sometimes have difficulty getting to the right place. For young people dealing with very severe complaints, these failures carry great consequences.
Patients frequently get trapped in the care system.
Advocacy and the Road Ahead for FNS Patients
Despite her deteriorating physical state and ongoing end-of-life considerations, Djamilla continues to speak out. Her primary goal is to generate public awareness so that other FNS patients receive prompt recognition and appropriate help. While she waits to see if a new treatment place can be found for her, her testimony underscores a call for attention to FNS.
Frequently Asked Questions
What is a functional neurological disorder (FNS)?
FNS is a medical condition where the cooperation between the brain and the body does not work properly.
How many people have FNS in the Netherlands?
According to Stichting FNS, an estimated minimum of 85,000 people live with the condition in the Netherlands, with roughly 3,000 patients suffering from severe forms of the disorder.
Why is FNS difficult to diagnose?
According to neuropsychologist Erik Scherder, the condition is often not visible on standard brain scans, which historically contributed to misunderstandings about the disease.
What treatments are available for severe FNS?
According to Professor Scherder, the condition requires a multidisciplinary approach.
Join the conversation: Share your thoughts on how healthcare systems can better support patients with rare or misunderstood neurological conditions in the comments below.
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