"It's turned my life upside down, and I absolutely hate it," laments Hannah Dickerson, a resident of Suffolk, as she reflects on her diagnosis of functional neurological disorder (FND).
At just 30 years old, Hannah was previously an active majorette, maintaining a fit and healthy lifestyle. She would walk over a mile daily to her job in administration and marketing in Ipswich. However, her life has dramatically changed, and she now relies on a wheelchair or crutches to navigate daily tasks, including getting out of bed and using the restroom.
"It's incredibly challenging to constantly feel like a burden and struggle with tasks that once seemed trivial," Hannah explains. "While this is my reality now, I still have some fight left in me to push through."
FND affects an estimated 50,000 to 100,000 individuals in the UK, impacting how the brain and nervous system communicate with one another. The exact cause of this condition remains unclear; however, some experts suggest it may be associated with stress, trauma, or responses to infections and inflammatory conditions.
Professor Mark Edwards, who specializes in neurology and related disorders at King's College London, highlights the significant disability caused by FND, comparing its effects to those seen in Parkinson's disease and multiple sclerosis. For Hannah, the disorder has been profoundly debilitating.
"I experience extreme fatigue and struggle with my speech. Additionally, I'm plagued by seizures, paralysis, loss of mobility, problems with walking, breathing difficulties, weakness in my limbs, and persistent brain fog," she shares. "Walking unaided is nearly impossible for me. I can manage about six steps before becoming breathless, which is why I depend on a wheelchair and require assistance from others."
Hannah's health began to deteriorate drastically in March 2022 when she lost sensation in her legs and feet, followed by similar symptoms in her arms and hands. This alarming progression affected her ability to speak. After enduring ten long months of uncertainty, she finally received a diagnosis of FND.
"I was taken aback and confused by the diagnosis since it was something I had never heard of before. It was a frightening experience filled with uncertainty about what lay ahead," she recalls.
Unfortunately, access to timely diagnosis, rehabilitation, and care for FND patients is severely limited throughout much of the UK, as noted by the charity FND Action. Many individuals face long waiting lists, forcing families to manage complex symptoms with little specialized support.
"We hear daily from people falling through the cracks in the system," says Kim Rosser, the charity's chief executive. "There is an urgent need for equitable and properly commissioned care pathways to ensure that everyone diagnosed receives the support they rightfully deserve."
Hannah experienced a frustrating journey to her diagnosis; initially, she was evaluated by a private neurologist before the staff at Ipswich Hospital confirmed her condition. However, once diagnosed, she felt abandoned. "I was essentially told to research neurological symptoms myself, with a dismissive, 'there's no cure; good luck' approach," she reveals.
"There's a stigma surrounding FND—it's not well understood despite being quite common. I've had to advocate fiercely for more assistance. Part of me resigned to the idea that this is my new normal, but I also cling to the hope that I won't remain this way forever."
Despite lacking much support from the NHS, Hannah finds strength in her family, particularly her father, Peter Lenney.
"I'm incredibly proud of her resilience and optimism in facing these challenges head-on," he expresses. "Maintaining a positive outlook is crucial, and we live in hope that one day she will regain her independence and return to who she was before."
While expressing gratitude for the services the NHS provides, Mr. Lenney feels frustrated by the limitations in care available to individuals like Hannah. "I can't fault the NHS as an organization; they do excellent work, but it's disheartening that they seem unsure of how to effectively treat FND," he notes.
Hannah acknowledges the complexity of FND, recognizing that its variability makes treatment challenging for healthcare providers. "There seems to be a significant gap in understanding because FND manifests differently in each person. It's a complicated issue, and I'm still trying to grasp it all myself," she admits.
Nevertheless, there may be a silver lining on the horizon. The Department of Health and Social Care has indicated steps are being taken to improve care for patients with conditions like FND, including funding for innovative research initiatives. In August, NHS England officially recognized FND as a primary sub-specialty within neurology, leading to the establishment of new national standards.
This development brings hope that patients will soon have better access to prompt, well-explained diagnoses and appropriate treatments.
According to Professor Edwards from the Institute of Psychiatry, Psychology, and Neuroscience at King's College, recovery is possible under ideal circumstances. "The core issue lies in how the brain functions rather than irreversible damage, meaning there is potential for improvement," he states. "While many individuals continue to face difficult symptoms, I have witnessed numerous cases where patients recover or significantly improve, especially when they have access to high-quality care. Unfortunately, this is often hindered by the limited availability of NHS services dedicated to FND, coupled with ongoing stigma surrounding the condition."
Currently, Hannah is investigating costly private treatment options like electric stimulation therapy, though research on its effectiveness remains inconsistent. "I've met and spoken with individuals who have returned to a near-normal life, and that gives me hope," she reflects. "That would be incredible for me, and while I remain realistic, I can't help but wonder: if it has worked for others, why can't it work for me?"
NHS England has been approached for comment.
