Sheffield mum living with neurological disorder that doctors know “nothing about” explains what it is like to live with the condition for awareness month
“I have got nobody I can go to,” says a Sheffield mum who is suffering from a neurological disorder similar to MS and Parkinson’s – but even her own GP practice knows ‘nothing’ about the condition.
Functional Neurological Disorder (FND) is a problem with the functioning of the nervous system, and how the brain and body send and receive signals.
Sheffield mum Katie is a support worker at the Children's Hospital, and the condition means she gets regular stroke symptoms, making it hard for her to attend work.
Despite hundreds of people suffering from the condition, there is still very little information or knowledge about it in the health sector, and Katie is desperate for a care pathway to be implemented to help people like her across the UK.
Katie Maciver who lives in Stannington, now wants to raise awareness of the condition during FND Awareness Month.
"There are hundreds of people with this condition but there is actually no care pathway at all – so there’s no treatment,” Katie said.
“I have had symptoms for about two and a half years but I just got diagnosed in November.
"You are told you have got it, and you have got to fend for yourself.
"Some people get seizures with it, but, me personally, I get stroke symptoms, such as right sided weakness; the right side of my face goes numb, and my right leg. I get tremors, brain fog, fatigue.
Katie is part of the FND Hope UK Facebook group, which has thousands of members that are suffering from the condition.
The disorder ‘mimics’ the symptoms of MS and Parkinson’s, which both have care pathways for support, and the group is now fighting to get a care pathway for FND.
"I was told that it could be MS, because it mimics MS and Parkinson’s – they cause structural damage to the brain, FND causes functional damage so nothing can be seen to prove it – whereas with MS you can get white matter on your brain in a MRI, there’s nothing structurally you can see with FND,” said Katie, who has had to take a considerable amount of time off work due to severity of the condition.
“When it first started a couple of years ago I had bouts, and I had periods in-between where I felt OK, but now it’s constant.
"I am still able to work at the moment but I have had a lot of time off sick and I am really struggling with that but there are lots suffering that mean they cant possibly work, they’re bed-bound.
“People can be fully-paralysed so they have wheelchairs. Apparently there are a couple of inpatient centres, but it is something like four in the whole of the UK.”
Katie says that she has ‘no one’ she can go to about the condition, and support for the disorder is non-existent.
Sufferers of FND have been offered psychotherapy, but she adds that there is a ‘misunderstanding’ that it is a psychological condition, when it is neurological.
The lack of information around the disorder means Katie has even been asked to drop a leaflet off at her GP surgery.
"It seems that when you get told you have it, you get referred to a website and then that is it. People have to fight for their own treatment,” Katie said.
"Other health professionals know nothing about it. I have tried to get support from my GP, but the GP’s have never heard of it.
"I have got nobody I can go to, at the moment I am really unwell with it and there is no one I can go to.
"There’s nothing other than the group and everyone supporting each other. The group put together their own leaflets, which I have taken one into work and I have been advised to actually drop one in at my GP surgery. It is just horrendous.”
There are meetings every month via Zoom, which allows people with FND to speak about their experiences, and to support other people suffering from the condition.
"There are thousands of people with it, so the Zoom meetings are the most important thing right now, people able to talk to other people with it,” Katie adds.