The N.E.A.D For Support

Hello, my name is Jane and I am the founder of Friends In N.E.A.D. I do not suffer from non epileptic seizures so when people first learn of this they often ask the same question, why I started Friends In N.E.A.D.

When my partner got ill just over seven or eight years ago, we were told it was likely to be temporal lobe epilepsy but as time went on and anti epileptic medication wasn't working we inquired about the possibility of it being Non epileptic attack disorder.

The very fact you are on this site probably means you are well aware of the difference between epilepsy and non epileptic seizures but in case this is all new to you I will briefly explain.

Non epileptic seizures often present visually in a very similar way to epileptic seizures but are not caused by a change in the electrical activity in the brain. There is still a lot of research needed into non epileptic seizures and they seem to have many possible triggers. Many attacks may be related to trauma and stress while many seem to be triggered by a massive range of possible triggers such as pain, tiredness, hunger, dehydration or even diet.

In some cases which are more often diagnosed as F.N.D (functional neurological disorder) it may be that there is a fault in the the pathway that sends or receives information to and from the brain. I am not a doctor so all this information is only based on what I have witnessed with my partner or what I have been told by people that have contacted me via Friends In N.E.A.D who have been seeking information, support or simply to talk to someone who believes what they are going through.

Non epileptic attack disorder can be a very isolating condition, especially when no one seems to believe or acknowledge what you are going through. A good support network can make a big difference to some one going through a very difficult time with this condition, especially during the early stages during or after diagnosis.

When my partner was diagnosed with non epileptic attack disorder we were simply told that it was most likely not epilepsy and that it was a condition called N.E.A.D.

I guess it was because the doctor was short on time to explain such a complex condition but we were told to go and look it up on the internet and that was that. We were left to figure it all out.

There was pretty much no support in our local area so I decided to educate myself about the condition and Friends In N.E.A.D was born.

The idea was to create a local online support group and arrange meet ups but the people that got in touch with me were spread all over England and eventually the world. To be honest I didn't expect to get much of a response from my posts and for a while I kind of felt like I was talking to myself. To my surprise more and more people started to contact me and that was great. It was really good to be reaching people but at the same time it was heart breaking because I was hearing about things that people should never have to go through.

Of course these things stay confidential with me and there are many things I have never forgotten. Some things are very hard to hear but what makes Friends In N.E.A.D so important to me is knowing that it has made a difference to so many people already. It is my goal to raise awareness of the condition so it is as widely recognized as epilepsy.

I want to put an end to the huge number of people being accused of faking this condition and an end to the bullying that is being endured as a result of the stigma and ignorance surrounding the condition.

I will be absolutely honest and tell you that there has been times when I have found it difficult to carry on doing this when my personal life has been busy or when I have doubted that Friends In N.E.A.D would ever be big enough to make the impact I dream of but then something always happens to remind me why I started and why I have got this far. This is especially true when I hear about young children going through it and having to suffer bullying and being told to stop faking. There is now no doubt in my mind that I will continue to run Friends In N.E.AD, it has become a massive part of my life and I couldn't imagine not doing it.

This is going to be the biggest year yet for Friends In N.E.A.D. I used to run this completely alone but over the last six months it has now grown into an awesome team. I would like to thank the team for your help and support and in advance for the awesome year we are about to have, so Nick, Emily, Louise, Lauren and Charlotte thank you so much, I appreciate you more than you know.

Thanks to every one in the group which has grown into a wonderful supportive family like environment and thanks to you for reading this right now .

The next event Friends In N.E.A.D will be involved in is the #Voices4FND event on the 25th march 2018 so watch out for more information.

That's all for now folks, wishing you all a great and gentle week ahead,

Jane T (Founder of Friends In N.E.A.D)