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<\/p>\nA woman who was diagnosed with a rare neurological disorder that caused her to go into cardiac arrest said it flipped her world “upside down”.<\/p>\n
Toni, from Wolverhampton, said doctors thought she might have had a stroke after she collapsed last January.<\/p>\n
The 35-year-old, who was later found to have Functional Neurological Disorder (FND), said there there was a lack of support for those with the condition, as well as for carers like her 10-year-old daughter Olivia.<\/p>\n
More than 2,300 people have so far signed a petition for increased funding, better training for medical professionals, and more accessible treatment for FND.<\/p>\n
Toni, who is the regional lead for the FND Action charity, said she spent three months in New Cross Hospital, Wolverhampton, after her collapse.<\/p>\n
She woke up temporarily paralysed. “I couldn’t use my legs, my bowels, my bladder, everything stopped working and my organs got affected and I started having fits,” she said.<\/p>\n
“It’s flipped my world upside down… I’ve got like seven surgeries coming up, so it’s not only affecting my brain, it affects my whole body.”<\/p>\n
Toni claimed she had learned more about FND through other sufferers on TikTok than from the NHS.<\/p>\n
She urged others with the condition not to give up and to advocate for themselves.<\/p>\n
“You feel like you’re the only person in the world with this condition and you’re not,” she said.<\/p>\n
“You want to learn and be educated, and [the NHS] doesn’t do that.”<\/p>\n
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Toni said she lost control of her bodily functions after her collapse [Getty Images]<\/p>\n
People with FND struggle with how their brain receives and sends information to the rest of their body, the NHS says<\/a>.<\/p>\n But unlike other more well-known conditions, there is no damage to the structure of the brain itself.<\/p>\n It can result in a broad range of symptoms<\/a> and lead to issues with movement, cognition and speech as well as persistent pain and fatigue.<\/p>\n The condition’s underlying cause is not known<\/a>, but some experts think it could be linked to stress, trauma or a response to a virus or other inflammatory condition.<\/p>\n The charity FND Hope estimates about 50,000 to 100,000 people in the UK live with it, but says it remains little-known, even among some medical professionals.<\/p>\n Bradley Watkiss says his functional neurological disorder makes him feel like he is “living on the edge” [BBC]<\/p>\n Bradley Watkiss, 24, who created the petition<\/a>, said he felt dismissed by the NHS after his diagnosis of FND in April 2024.<\/p>\n “I was just told, ‘hey, this is what you’ve got, now you know you’ve got it, just deal with it’,” he said.<\/p>\n The Wolverhampton resident was diagnosed after a period of intense headaches and daily vomiting led him to collapse at work.<\/p>\n He said he could not currently work due to ongoing symptoms, which also included extreme fatigue and seizure-like activity, and wanted to achieve greater awareness of the “misunderstood and underfunded” condition.<\/p>\n “I now don’t know when the symptoms are going to happen because of how unpredictable it is. It’s [like] living on the edge,” he said.<\/p>\n Chris Symeon says FND services are “extremely patchy” [BBC]<\/p>\n Chris Symeon, a consultant neuropsychiatrist and FND Hope trustee, described targeted FND services as “extremely patchy”.<\/p>\n He claimed only about 50% of NHS areas currently provided specific FND rehabilitation and added: “That wouldn’t be acceptable for any other neurological condition.”<\/p>\n “For some reason we’re allowing that to be the case for FND.”<\/p>\n ‘Cutting-edge research’<\/p>\n A spokesperson for the Royal Wolverhampton NHS Trust, where Mr Watkiss has been treated, said its neurology department was committed to supporting patients with FND.<\/p>\n “Our multidisciplinary teams work together to provide tailored care and ongoing support, collaborating with other services such as talking therapies or neuro-rehabilitation, and we can refer to specialist centres if more appropriate,” they added.<\/p>\n NHS England did not comment when approached by the BBC, but a spokesperson for the Department of Health and Social Care said it was taking decisive action to transform care for patients with conditions such as FND.<\/p>\n “This includes setting new standards for diagnosis and treatment, running national programmes to improve services and funding cutting-edge research,” they said.<\/p>\n Follow BBC Wolverhampton & Black Country on BBC Sounds<\/a>, Facebook<\/a>, X<\/a> and Instagram<\/a>.<\/p>\n More on this storyRelated internet links![\"Bradley](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2025\/10\/40ea7a9444295b915581e5ed766c6cb8.jpeg\"\/)
<\/p>\n![\"Chris](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2025\/10\/0fae33534277b630eb63a05d2a719461.jpeg\"\/)
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