VOICES IN STORIES

Sharing your experience with others is just one of many ways you can help raise awareness. It allows others to have an insight in to what it may feel like to be walking in your shoes. 

Whether you are a person who has the diagnosis, a carer, a family member, a friend or just someone with interest … your story matters.

You could write it as a snippet of life in the form of a blog post, or as a story, or record a video. You may also want to consider sharing your story in a newspaper or magazine.

To submit your story please complete the form below. For videos please send them to contact@fndaction.org.uk

Stories will be shared across the charity’s social media sites throughout the day, and displayed below.

News

FND Awareness Day UK 25th March 2021 | Hannah’s Story

Hannah’s Story #Voices4FND In 2009 I burnt out and was diagnosed with a Functional Neurological Disorder. I would twitch and jerk in response to sound or touch. I looked like a peculiar air drummer, with no rhythm. These disorders, which in other people can cause a whole host of symptoms, including paralysis, seizures and blindness, are not structural. Tests come back normal. They are ‘functional’, that’s to say our brain’s function

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FND Awareness Day UK 25th March 2021 | Lauren’s Story

Lauren’s Story #Voices4FND I have had FND for 12 years, but was misdiagnosed for 8 of those years. I had my first official FND spell at the age of 10, and I am now 22. My spells present themselves as non epileptic seizures on the left side of my body happening primarily at night. It will happen during the day if I am sick, stressed, or don’t exercise everyday. My FND

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FND Awareness Day UK 25th March 2021 | Sophia’s Story

Sophia’s Story #Voices4FND I am 38 years old and I have five children. I work Children and Adolescent Mental Health Service (CAMHS). I went into hospital with stroke like symptoms and was diagnosed June 2020, unfortunately I spent my birthday in hospital lol. To be completely honest I didn’t know about FND until being diagnosed and was surprised to see the lack of knowledge in the condition. I experience muscle weakness,

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FND Awareness Day UK 25th March 2021 | Mike’s Story

Mike’s Story #Voices4FND Hello I’m Mike, I am 51 yrs old. I had my first seizure back in 2014, after a 4 year battled I was finally diagnosed with FND/NEAD in 2018. It has changed my life a lot meaning I cannot do things I use to love, like driving. It really impacts on what you can do, I was medically retired some years ago. My seizures come from trauma I

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FND Awareness Day UK 25th March 2021 | Nicola’s Story

Nicola’s Story #Voices4FND I started having blackouts in 2009 and was diagnosed with Non epileptic seizures in 2011, i lost my vision & was hospitalized in 2015, after having numerous symptoms of FND for 3 years i was diagnosed in 2018 after again losing partial vision, this is still the same currently. I struggle some days but i am determined to show FND who is boss, i am staying strong and

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FND Awareness Day UK 25th March 2021 | Tanya’s Story

Tanya’s Story #Voices4FND I suffered with severe birth trauma after having my first baby due to complications, emergency c section and baby needing to be admitted to special care baby unit. This left me with post traumatic stress disorder and postnatal depression, however, this was never picked up. When I fell pregnant with my second baby, the post traumatic stress symptoms came back with avengence- I was so scared of giving

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FND Awareness Day UK 25th March 2021 | Caroline’s Story

Caroline’s Story #Voices4FND Myself and my husband are carers to our 12 year old daughter Clodagh who was diagnosed in July 2020. But we think it started back in August 2019 ,Clodagh was in and out of hospital constantly for 2 months before we got the diagnosis. She suffers very bad headaches blackouts non epileptic seizures sleepwalking in the evening time were she thought it was the next day that lasted

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FND Awareness Day UK 25th March 2021 | Debbie’s Story

Debbie’s Story #Voices4FND My husband was diagnoses 3 weeks ago. He has gone from decorating, driving and caring for our young son to not being able to leave the house. He has up to 8 what I can only think are seizures a day, he has developed a tick and stammer. We have had no in put on how the neurologist who has only seen him once in A and E

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FND Awareness Day UK 25th March 2021 | Shelby’s Story

Shelby’s Story #Voices4FND I am 23 years old, diagnosed October 2020 after an accident at work had me laid up off sick, I subsequently lost my job due to the inability to contonue my job as a manual metalworking machinist. Following this I had pain in my shoulder, numbness in my hands, arms and face, after developing tremors in my arm and my leg bouncing whilst trying to walk my physio

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FND Awareness Day UK 25th March 2021 | Caroline’s Story

Caroline’s Story #Voices4FND I was diagnosed in March 2020 at the age of 48, to my surprise, I had been suffering for a few years. My attacks mimic a stroke. My right side is affected. My face will droop, tongue will flop to the right, speech is slurry or I can’t talk. My right arm becomes weak, my right leg is affected the worst. It will become weak or drag, it

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FND Awareness Day UK 25th March 2021 | Imogen’s Story

Imogen’s Story #Voices4FND Hi, my name is Imogen and I’m 34. I suffer epilepsy and these sudden ‘odd seizures’ began suddenly in 2019. I know the difference, because when having an fnd I’m shaking and sweating but totally conscious. The psychologist said my past traumas of rape, hemorrhage, hit and run etc are responsible. But I think bulimia; anxiety around food, is what triggers most my seizures. They are very common

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FND Awareness Day UK 25th March 2021 | Billy’s Story

Billy’s Story #Voices4FND In 2013 I was diagnosed with epilepsy. During 2016, after various hospital stays in Glasgow, with video EEG analysis, another diagnosis Functional Neurological Disorder seizures (FND) was added to the list. What happens to your body with FND? A myriad of confusion, frustration, negative & guilty emotions hit me:- was I suffering from a psychological illness, another neurological illness, was there a mis-diagnosis, was it connected to epilepsy

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FND Awareness Day UK 25th March 2021 | Nicola’s Story

Nicola’s Story #Voices4FND Hey I am Nicola and I have been living with FND since 2017. I was a primary school teacher with a very busy life. I had pain in my hip and was walking with a limp, I just thought I hit against a student’s desk. The pain worsened so I went to my GP, who ran tests and sent me for physio. I was there not even 5

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FND Awareness Day UK 25th March 2021 | Summer’s Story

Summer’s Story #Voices4FND Hello world my name is Summer, I am an 11 year old girl. In December 2020 I was diagnosed with FND after collapsing at school and not being able to get back up. I spent a week in hospital with paralysis from the waist down. After numerous tests which all came back clear this is what the neurologist diagnosed. I was a very happy, healthy girl and had

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FND Awareness Day UK 25th March 2021 | Megan’s Story

Megan’s Story #Voices4FND My symptoms started in 2010 when a sporting injury happened. The doctors didn’t have a clue where to start or what to test for. Years went by and I had lots of testing done. I was suffering with the left leg paralysis and numbness/weakness on the left side of my body. Leaving me unable to walk and relying on crutches. I fell downstairs in 2014 & in that

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FND Awareness Day UK 25th March 2021 | Kirstyann’s Story

Kirstyann’s Story #Voices4FND My life changed significantly in Oct 2020. What initially was thought to be a stroke with left sided eye droop, weakness left side and slurred speech was diagnosed as FND. It was frightening. Although having a diagnosis was somewhat a relief, it has changed my whole well-being. I suffer from pounding headaches, severe fatigue, loss of balance, dizziness, memory issues, unable to process information and a speech stutter.

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FND Awareness Day UK 25th March 2021 | Zoe’s Story

Zoe’s Story #Voices4FND I am 31 years old and in May 2020 I had my first seizure and my second in July. I’ve been having multiple seizures everyday since. I have 3 beautiful children and a supportive husband. I worked full time, was enjoying life and this came out of nowhere. I also have a variety of other fnd symptoms such as being unable to walk, tics, speech problems and more.

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FND Awareness Day UK 25th March 2021 | Katie’s Story

Katie’s Story #Voices4FND My name is Katie. I was diagnosed with fnd in November. I started with symptoms last march but when I think about it my symptoms began over 2 years ago. My symptoms are joint pain, fatigue, numbness of my face and right leg, a horrible tingling sensation and vertigo. It has had a massive impact on my life and those around me and I want to make others

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