In 2014 I was diagnosed with FND, and I had never heard of it. At first I was sceptical, wondering if it was just another medical label just to keep me happy. I have been ill most of my life and had got used to being dismissed. All my life I had received a different diagnosis and I was not sure any of them had been correct. Before my diagnosis, I was fed up of being told it was ‘all in the head’ I knew I was not imagining my symptoms and I was definitely not able ‘to pull myself together ‘.

My diagnosis changed my whole outlook on myself and my life long condition. Once I received all the correct information, I knew that this diagnosis was correct. It explained the vast amount of symptoms and unpredictability. I was satisfied that I had received the correct diagnosis, but very quickly dismayed to find out there was no specialist services for those with FND. I was not really surprised because not many people had heard of it. That is when I began raising awareness amongst healthcare professionals as well as the community.

I had the support of two doctors and through information sharing we have been able to provide structured support to those with FND and their family/ carer. Yet I knew there was still very little awareness and those with the condition needed a lot more support as well as relevant services.
That’s when I went to Freda ( mum) and asked her to help.

Since that day we have been actively involved in raising awareness of FND in Northern Ireland. We organised Northern Ireland’s first awareness event in March 2019 with Dr Nigel Lyttle as one of our guest speakers, we were supported by many charities, as well as those with FND.

After this event we realised the need for services was urgent, so firstly we put a committee of trustees together and then applied to the national lottery for an awards for all grant. We were delighted to secure funding for the ‘fly free from stigma’ project. This grant was allocated to raise awareness, educate and set up support structures for those with FND.

Jeanette