Later this month, March 25th, it’s Functional Neurological Disorder awareness day. There are so many ‘understated’ chronic illnesses out there so I guess people might ask, ‘Why raise awareness about FND?’. That’s a good question, I’m going to give you just some of the reasons why it’s important for people to learn about and be aware of Functional Neurological Disorder.
Since being diagnosed with FND in August 2013, my entire life has been turned upside down. This illness destroys lives, ruins opportunities and can leave a person permanently disabled. There are people living with FND who are wheel chair bound, they can’t walk or sometimes even feed themselves. Despite this, as there is so little known about the illness these people are left to get on with it. As it stands, despite the fact that nearly 40% of patients in most Neurological wards have FND, there’s no cure. Nothing. Imagine your whole life crumbling down around you and all the doctors can say is, ‘One day you MIGHT get better’.
I believe that there’s someone out there who could do something. If we work together to raise awareness, maybe someone might just get it. Perhaps not a cure but maybe a way to make symptoms less harsh, less ‘self help’ and more ‘real help’.
Personally, my main symptoms are as follows :
Non epileptic seizures, migraines, neuropathy (shooting pains all over), tremor, extreme fatigue and fainting. I also now experience ‘Frozen gait’. This is temporary paralysis of my legs and feet.
However, there are many other symptoms a person with FND can experience. These can be found on the FND Action website :
I am extremely lucky to have a great support system around me but others are not so lucky. Imagine experiencing problems like these without any help!
I was 31 when I was first diagnosed with FND and managing and understanding what was happening to me was frightening to say the least. When you are told that what is happening to you is very real but there’s nothing that can be done, you begin to doubt your sanity. Imagine all of this happening to you and being a child. It breaks my heart that children have to go through this. I believe that this makes it even more important to keep working to find a resolution.
I am currently finalising plans for a pamper evening to raise money for the fantastic charity ‘FND Action ‘. They do an incredible job raising awareness and supporting fellow sufferers. I believe that support systems like this charity are vital in getting through life with a chronic illness.
I would like to thank you for taking the time to read my story. Your support means a lot. I constantly live in hope that one day I will wake up and all the pain will be gone. I will continue to fight for my loved ones.