Patient Advocacy
This tag is about Patient Advocacy: supporting patient voices, rights, and effective partnerships with doctors in complex and chronic conditions.
State Rep. Tricia Byrnes Is Looking for the Filmmaker Who’ll Investigate FND
Facebook Stories
Social media
Missouri State Rep. Tricia Byrnes is seeking a filmmaker to investigate Functional Neurological Disorder. She says hundreds of families report children were labeled with FND before doctors fully checked seizures and loss of mobility, and that second opinions were blocked.
Maddie Aumann: From an FND Diagnosis to Maddie’s Law
FND Nope
Moderator
Maddie Aumann was diagnosed with FND before genetic testing identified a rare SCN9A disorder. Her mother, Christine Aumann, describes how the FND label continued to affect Maddie’s care even after that discovery, ultimately helping inspire Maddie’s Law.
Diagnosed with FND at 13, Eight Years Later Doctors Found a Chiari Malformation and Spinal Cord Syrinx
FND Nope
Moderator
Daniele Gray lost the ability to walk at 13 and was diagnosed with Functional Neurological Disorder. Eight years later, an MRI revealed a 20 mm Chiari I malformation and a spinal cord syrinx requiring surgery. Was the underlying neurological condition missed?
FND, Compensation and the Convenient Theory That Financial Support Keeps People Disabled
FND Nope
Moderator
A 2026 Frontiers in Neurology review explores whether compensation, litigation and financial support can reinforce FND disability. But where is the evidence that paying injured people keeps them sick, and what happens when speculative theories influence legal liability?
Another case of Lyme disease attributed to FND, due to negative Lyme testing
mel
Convalescent
Maja Bagdziun shares her story with LDUK, after being given “a confusing FND label” because she tested negative for Lyme infection.
Diagnosed With FND, Died From a Pulmonary Embolism: The Questions Allison Lawlor's Story Raises
FND Nope
Moderator
Allison Lawlor lived with severe neurological symptoms, received an FND diagnosis and later died from a pulmonary embolism. Her story raises important questions about diagnostic uncertainty, thromboembolic risk and why patients owe no loyalty to a diagnosis.
Diagnosed With FND. It Was Buerger's Disease. She Lost Her Leg
FND Nope
Moderator
Danielle Thomas reported numbness, worsening walking difficulties and legs that felt like they were dying. Doctors diagnosed FND. Months later, vascular investigations revealed blocked arteries, gangrene and Buerger's disease. She eventually underwent a below-knee amputation.
The Weaponization of FND: Selma Blair, MS, and Hysteria With Better Branding
Quackademic
An FND-focused healthcare professional accuses Selma Blair of seeking sympathy, questions her MS history using dancing videos and declares her symptoms textbook FND. Apparently, hysteria got a rebrand, not a retirement.
Diagnosed With FND After Losing Her Daughter. Years Later, Elly Had 15 Brain Lesions and Multiple Sclerosis
FND Nope
Moderator
Elly Littlejohn was diagnosed with FND after losing her daughter to a drunk driver, despite abnormal MRI findings. Years of worsening symptoms, additional brain lesions and abnormal spinal fluid results eventually led to an MS diagnosis. Her story raises serious questions about diagnostic anchoring, trauma-based assumptions and delayed treatment.
Diagnosed With MS, Then Misdiagnosed With FND. It Was Parkinson’s.
FND Nope
Moderator
Emma Tinkler already had multiple sclerosis when worsening neurological symptoms were labelled FND. After two years of deteriorating mobility, a second neurologist diagnosed Parkinson’s disease. Six weeks after starting medication, she was walking normally again.
94.4% of Ehlers–Danlos Patients Reported Psychiatric Labelling or Dismissal. Two-Thirds Reported Conversion Disorder
FND Nope
Moderator
A 2025 study of 429 patients with hypermobile Ehlers–Danlos syndrome found that 94.4% reported psychiatric labelling or accusations of fabrication, while 66.7% reported a previous conversion disorder diagnosis. The findings raise serious questions about diagnostic dismissal, medical credibility and missed physical illness.
I Am Angry
Christoff
Spousal caregiver
I am angry that uncertainty became certainty, that softened language obscures what is actually being claimed, that scepticism is treated as hostility, and that while we argue about FND, my wife keeps getting sicker.
