A Powerful Case for FND Awareness: This Is How a Suffolk Woman’s Life Was Upended—and Why We Must Do More
Hannah Dickerson's story is hard to forget. “I hate it, it’s turned my life upside down,” she says, describing the sudden shift brought on by functional neurological disorder (FND). Once a fit, active majorette who walked a mile to her admin and marketing job in Ipswich, she now relies on a wheelchair or crutches and needs help with basic tasks like getting out of bed or using the toilet. The contrast is stark, and her frustration is palpable: “It’s very hard to constantly feel like you’re a bit of a burden and you can’t just easily do something.” Yet she adds, “There is still some fight in me.”
What is FND? It’s a condition that appears to disrupt the brain and nervous system’s ability to communicate signals. While its exact cause remains unknown, experts suggest links to stress, trauma, infections, or inflammatory events. In the UK, estimates suggest between 50,000 and 100,000 people live with FND. Neurologist Mark Edwards at King’s College London describes the condition as producing significant disability, with a impact comparable to diseases like Parkinson’s or multiple sclerosis.
For Hannah, the impact is profound. She endures fatigue, speech difficulties, seizures, paralysis, mobility and gait problems, breathing issues, limb weakness, and brain fog. She cannot walk unaided and can manage only a few steps before breathlessness forces her into a wheelchair, dependent on others for daily needs.
Her decline began in March 2022, when she lost sensation in her legs and feet, then in her arms and hands, and her speech deteriorated. After ten months of uncertainty, she received her FND diagnosis. “I was confused and quite shocked,” she recalls. “It was scary and I didn’t know what it meant.”
Access to diagnosis, rehabilitation, and ongoing care for FND remains severely limited across much of the UK, according to the FND Action charity. Many patients face long or expanding waiting times and scant specialist support, forcing families to cope with complex symptoms with minimal professional guidance. “We hear from people every day who are falling through the gaps,” says Kim Rosser, the charity’s chief executive. She advocates for equitable, properly commissioned care pathways so everyone diagnosed receives the treatment they deserve.
Stigma and gaps in understanding also complicate matters. Hannah had to secure a private neurologist’s diagnosis before Ipswich Hospital would officially confirm FND. After that, she says, she was left to manage largely on her own: “I was told to look up neuro symptoms, ‘there’s no cure; see you later.’” The stigma around a condition that is still often misunderstood has made her fight for further support—even as she clings to hope for better outcomes.
Family support has been a lifeline. Hannah’s father, Peter Lenney, praises her resilience and optimism. “You have to keep positive and we live in hope that one day she will regain some independence,” he says. He also acknowledges the NHS’s value while lamenting its limits: “The NHS is fantastic, but it’s frustrating when they don’t know how to handle it.”
Hannah recognizes FND’s complexity. “There is a lack of understanding and knowledge because it’s so different for everyone,” she notes. “It’s a minefield, and I’m still trying to comprehend it.” Still, there are glimmers of potential. The Department of Health and Social Care has promised decisive reforms, including funding for cutting-edge research. NHS England has formally recognized FND as a core neurology sub-specialty and established new national standards, with the aim of providing clearer diagnoses and appropriate treatments more quickly.
Professor Edwards notes that recovery is possible in theory: FND stems from a brain-function problem rather than irreversible damage. With access to high-quality care, many people improve or recover, though the reality remains challenging due to limited NHS services and stigma surrounding the condition.
Hannah is currently pursuing costly private options, such as electrical stimulation therapies, despite limited and inconclusive evidence of their effectiveness. She remains hopeful about regaining greater independence, inspired by others who have returned closer to a normal life. “That would be brilliant for me,” she says, “but I’m also realistic.”
NHS England has been contacted for comment.
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