Thanks for taking the time to visit our page.

We are aiming to raise money for FND as we hope to raise awareness for a charity that is unknown to many people. In our group we have a person with FND and have therefore experienced the toll it takes on people. We hope to earn money to improve the amount or research and resources that go into FND in the hope that we can make lives easier for people who suffer with it.

Functional Neurological Disorder (FND) is a brain disorder that can encompass a diverse range of neurological symptoms including limb weakness, paralysis, seizures, walking difficulties, spasms, twitching, sensory issues and more. Anyone of any age can receive the diagnosis. For many symptoms are severe and disabling, and life changing for people.

To raise money we are going to do a sponsored litter pick on the 27th July. But its not just any litter pick. We will dress up!

We hope that you consider donating to FND Action in the hope that we can make a difference in the research done so that people with FND can have a greater quality of life.

My FND story

Hi, I’m Gabby and I have FND. I am 16 and was diagnosed 7 months ago. It can be known as many other things like a Conversion Disorder; a Functional Tic Disorder or Non Epileptic Attack disorder. 

FND is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and receives signals. One way of thinking about FND is looking at it as a bit like a ‘software’ problem on a computer. The ‘hardware’ is not damaged but there is a problem with the ‘software’ and so the computer doesn’t work doesn’t work properly. Its like I have 10 tabs open on a computer and then I open an 11th like a computer could crash, I get FND symptoms. 

In early January I started to feel ill a lot; I was constantly tired, dizzy and had a headache. I had just stopped self isolating from covid, so I thought that my symptoms were to do with that. However, a few days later I started experiencing spasms in my stomach and shoulders and so was taken to A&E to be checked out. It was put down to Anxiety and they said that they couldn’t help me. Over the next few days the spasms got worse and I was admitted to hospital as they weren’t stopping. I was diagnosed with functional tics and Non Epileptic Attack Disorder (a form of FND). 

Non Epileptic Attack Disorder is a condition that causes seizures which are not due to epilepsy which have a psychological cause. They are called dissociative seizures and they may look a bit similar to an epileptic seizure, but they are not. They will not cause brain damage, and will not badly hurt me. 

I was originally put on medication hoping that it would calm my symptoms down so that I would be able to return to an education setting, however it didn’t work and I faced a long fight ahead of me trying to understand what was happening to my body. I was so scared and I didn’t know what to do. 

I was discharged from hospital, however over the next fortnight my symptoms were worsening and  I developed new symptoms including :

• Dystonia in my hands and feet
• Brain fog
• Sleep Attacks
• Limb weakness
• Drop attacks
• Vocal tics
• Physical non epileptic seizures
• Dissociative seizures 
• Tic attacks
• Paralysis

Just to name a few. 

These forced me to drop out of school and my extra curricular activities like netball, and spend a lot of my time getting numerous tests done including MRIs, EKGs, EEGs and many blood tests. My paediatrician even contacted Oxford to see if they had any suggestions on what blood tests to run. However, everything came back normal. 

I knew nothing about FND or how to manage my symptoms, but over the last 5 months, I have done a lot of research in how to manage them and what FND is. 

I still have a long way to go in recovery, however I have learnt a lot of my triggers and I am able to establish when I am going to have a seizure allowing me to live a somewhat normal life and go out with my friends and family knowing that I will be safe. Despite my difficulties in attending school, I was able to complete some of my GCSEs and hope to attend College in September. 

Getting diagnosed with FND changed my life and my priorities. I am now much more appreciative of things that I used to take for granted - like being able to walk, and have fun by going out. I appreciate people and things in my life so much more as I know how much I have had to fight and be resilient to overcome the stigma that comes around having an illness that nobody knows about. 

FND is a condition that is unknown between communities and that needs to be changed. Hence, on the 27th July 2022 myself and my friends are doing a sponsored fancy dress litter pick to spread awareness about this disability and to raise money for more research to be done so more people like me can receive treatment and advice on how to manage their illness.