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.
What Makes a Doctor a Good Doctor?
Christoff
Spousal caregiver
A reflection on what makes a good doctor in the context of complex chronic illness, focusing on collaboration, systems thinking, and clinical humility.
Advice from an FND Sceptic for Those Newly Diagnosed
Christoff
Spousal caregiver
What advice would I give to anyone newly diagnosed with this disorder? Advice that I wish I had received back then?
