FND is where the brain struggles to receive and send information to the rest of the body \u2013 manifesting in symptoms such as seizures, chronic pain, insomnia, IBS (irritable bowel syndrome), limb weakness, memory issues, depression and migraines.<\/p>\n
NHS bosses have said they are looking to improve care and support for FND sufferers PHOTO: Canva<\/p>\n
Mr Smith, who is a member of Pinchbeck Parish Council, lives with the disorder and has been on a mission to improve the current system and outcomes for other sufferers, by working with Lincolnshire\u2019s Integrated Care Board (ICB).<\/p>\n
He said: \u201cAt the moment its a complete and utter disjointed mess where people bounce around the system desperately seeking a solution.<\/p>\n
\u201cA lot of people with the disorder have a fairly normal life and then present symptoms which no one can explain \u2013 this can be frustrating.<\/p>\n
Pinchbeck Parish Councillor John Smith PHOTO: Supplied<\/p>\n
\u201cFND is the second most prevalent issue that faces specialist neurology but people are often dismissed. There is a lack of education from NHS professionals but also from people with the disorder.\u201d<\/p>\n
The non-curable condition can affect people from as young as four-years-old up to the age of 94.<\/p>\n
Due to the lack of support, individuals with the disorder are often desperate for solutions and Mr Smith has helped organise events in Pinchbeck and Stamford<\/a> to create a better support system for those who are struggling.<\/p>\n The meetings<\/a> attracted hundreds of visitors, including people from Grimsby<\/a> and other areas of the county who travelled to find answers.<\/p>\n Chief Nurse at Lincolnshire ICB, Martin Fahy, and Dr Andy Fox from Lincolnshire County Council Public Health agreed to chair the event, which was also attended by NHS professionals, social workers, community care workers and teachers.<\/p>\n \u201cPeople felt lost and by putting the events on we gave them hope and purpose,\u201d Mr Smith added.<\/p>\n \u201cA number of professionals came along because they openly admitted to struggling with how to manage and make a difference to FND sufferers.<\/p>\n \u201cThey came along and listened and contributed to discussions and have continued to be in touch and help us \u2013 they have been fantastic.<\/p>\n \u201cWe truly believe that the event made a huge difference and influenced the ICB to begin to take action and establish some working groups to look more closely at FND and the support people need.\u201d<\/p>\n Although the future is starting to look brighter for those diagnosed with the condition, the ride up until this point hasn\u2019t been smooth for many individuals.<\/p>\n Jennifer Sullivan\u2019s story began more than 14 years ago when she was biking home from work and suddenly felt extremely fatigued and experienced leg weakness.<\/p>\nAn event\u00a0to discuss the functional neurological disorder in Stamford earlier this year attracted more than 200 visitors PHOTO: Supplied<\/p>\n
A doctor checking an x-ray film of the brain PHOTO:Stock<\/p>\n
Jennifer Sullivan was diagnosed with FND when she was 31-years-old PHOTO: Supplied<\/p>\n