'It has a huge impact': Cork woman raising awareness of functional neurological disorder

COBH woman Jackie Baumann is raising awareness of functional neurological disorder (FND) and how seizures significantly impact her daily life.

FND can present with a wide range of neurological symptoms. The condition can affect movement, while also causing sensory issues, cognitive issues, and seizures.

Ms Baumann has seizures almost daily and has been out of work for 17 months as a result.

“It has a huge impact on not just me, but my kids and my husband, people who are around me when having these seizures,” said Ms Baumann.

“That is the hardest thing for me, is my children having to see me like this daily.

“It is hard, they are used to it now, but it is still upsetting for them.”

FND symptoms can vary from person to person, and can include functional weakness and tremors, sensory and cognitive issues, seizures, and speech and swallowing difficulties.

Associated symptoms can include pain, fatigue, and anxiety.

Ms Baumann spoke about the challenges.

“To be honest, you just have to get on with it, really,” she said. “It’s not easy. I’ve had seizures out and about. I have had seizures at home. I try my best to keep going.

“I try to stay positive and take it each day as it comes. Every day is different with it, so when you have a good day you just enjoy it. And when you have a bad day you just remember you will have a good day again.

“I am lucky I have my kids and husband around me to keep me positive. I am doing a course in Cobh at the Further Education & Training Centre. I do that three mornings a week, just two hours in the morning to get out. They have been very supportive.”

Established in 2023, FND Ireland is the first Irish charity dedicated to advocating for and supporting those living with FND.

The support services provided by FND Ireland include the monthly peer support group meetings for people living with the condition, for family members, and for carers supporting people with FND.

The peer support group meetings allow the FND community to get together and share relevant information and experiences.

Mallow is one of the locations where FND Ireland host a peer support group.

FND Ireland chairperson Eamon McPartlin told The Echo that the peer support groups play an important role.

“So many people with FND think they are the only one in their local area who live with it. So, it is very challenging to get support and that is because we don’t have the dedicated treatment clinics, until we get the clinic up and running in St James’s in Dublin initially,” Mr McPartlin said.

“That is why the FND peer support groups are so important. In Mallow, people come together and they can share their experiences openly,” he said.

“The biggest thing people get out of the FND Ireland peer support groups is to know that they are not alone.

“That people can share with others and by sharing with others, it helps and supports others.”

Ms Baumann said: “Eamonn [McPartlin] reached out to say he was doing the FND peer support group in Mallow.

“I just find because I didn’t know anybody with it and it was so unknown, it was lovely for myself and my husband to be able to speak to other people about FND, and who understand how it affects your daily life.

“It is just nice to be able to talk to other people who understand, really. Everybody in there has completely different symptoms and different aspects of FND.”

Mr McPartlin adds that more needs to be done to raise awareness among the public.

Although FND is the second-most common reason that people see a neurologist in this country, most people in Ireland have never heard of it.

“The biggest hurdle with the majority of people is that they have never heard about the condition,” he said. “With FND, when there is not that awareness in the general public it is very difficult.

“The other challenge for the public to understand is how broad the symptoms of FND can be. It can be a challenge to explain to someone that someone with functional seizures can have the same day-to-day challenges as someone living with epilepsy.”

FND Ireland also recently presented to Oireachtas members in Leinster House.

Speaking to The Echo, Pádraig Rice, Social Democrats health spokesperson and TD for Cork South Central, has called on health minister Jennifer Carroll MacNeill to deliver improved services for FND patients.

“Ireland’s network of neurological services remain under-resourced and understaffed and, in some cases, completely absent,” said Mr McPartlin.

“Despite the fact that around 9,000 people in Ireland live with FND, there is not one specialist FND service in the country.

“This makes Ireland a complete outlier in Western Europe. Funding must be provided to address this major gap in the State’s neurological services. The minister for health must deliver for FND patients and their families.”

For anyone wishing to contact FND Ireland to find out more about their services and the support they provide, visit their website at www.fnd.ie.