We felt abandoned and wanted to do something to help other people with FND says daughter who has created patient support packs

Lianne has now set-up a support group for other families who’ve received an FND diagnosis as well as creating support packs to give to people in hospital who’ve been diagnosed with the condition.

Due to the nature of the symptoms being similar to those experienced with other neurological disorders, getting an initial diagnosis was the first challenge faced by Lianne’s mother Viv Gardner, 64.

Lianne, 42, who lives in Ryhope, said: “A few years ago my mam was taken to hospital with stoke symptoms on her left-hand side. She had lots of different tests, including an MRI scan but doctors couldn’t identify the cause of the problem.

“She can also suffer from seizures and is in chronic pain - at one point she was rushed into hospital as it was thought she may be having a heart attack.

“Mam was also recently been blue-lighted to hospital with stroke-like symptoms, only this time on her right hand side.”

Last year (2024) Viv was eventually diagnosed with FND, a neurological condition where the brain and nervous system don't work together as they should.

Symptoms can include fatigue, pain, arm and leg weakness and seizures. Despite up to an estimated 100,000 people living in the UK with FND, Lianne says that following her mam’s diagnosis, the family felt left to their own devices with little support in place or access to treatment.

Lianne said: “My mam saw her own GP as well as a neurologist and the general message was that she will have to accept it and there’s nothing they can do.

“There’s no real medication or quick-fix for her condition.”

Following her mother’s diagnosis, Lianne decided she wanted to do something to help both her mother and others suffering from FND. After carrying out her own extensive research into the condition Lianne has produced support packs which she wants to see rolled out to patients in all North East hospitals after an FND diagnosis.

She said: “When my mam got the diagnosis, it was like a lightbulb moment and everything made sense. However, it was like here’s your diagnosis and a couple of websites to look at and that was it.

“There are so many people out there with FND, but there’s no easy treatment. It’s about looking at distraction techniques and effectively rewiring your brain. It needs a multi-disciplinary approach”

The FND packs include finger spinners and fidget toys, sweets, pack of tissues, and information about where people can get support.

Lianne said: “The finger spinners and fidget toys can help to focus your brain and support coordination, whilst the sweets are just there to help put a smile on people’s faces.”

One of the places listed in the support pack is the FND Sufferers and Caregivers North East England Facebook support group.

Lianne has also set-up her own Sunderland support group and is due to host her first session on Friday July11.

She said: “A lady called Dawn Steele has set-up a support group for people with FND and their families in Annfield Plain. It’s obviously quite a distance for people to travel and so I wanted to set up my own coffee morning group for people in the Sunderland area.

“It’s a chance for people to meet and share their stories, advice and offer support. We can also signpost people as to where to get help.”

The first meeting is scheduled to take place at Building Block Day Centre CIC on Friday July 11 between 1pm and 2.30pm.