Magherafelt Epilepsy Action group celebrates one year of support in the community

Magherafelt Epilepsy Action group was set up with the help of Joanne Greer who is on her own journey with Epilepsy.

Joanne spoke to the County Derry Post about her own journey, the reason behind setting up the group and the power of education around Epilepsy.

The group was set up by the UK wide charity Epilepsy for Action. They have several support groups throughout Northern Ireland, including Belfast, Lisburn, Enniskillen and now Magherafelt.

Speaking on behalf of the Magherafelt group Joanne said: “In the United Kingdom, Northern Ireland has the highest prevalence of epilepsy, so it is great to see Epilepsy Action making their way here. People in Northern Ireland seem to be shy at coming forward and asking for help when it comes to Epilepsy. The people that have been coming to the group are great. We have a small group of six most weeks but that can fluctuate. It’s amazing seeing people come to the group. There are people there that might not know other people have it. Some people mightn’t feel comfortable in a group so I will often signpost them to the Epilepsy Action website. They have some very useful information.

“The group is a place for people to come together, be yourself and relax. There is no pressure, Epilepsy is hard enough as it is. The group is open to anyone over 18, if the person themselves has the condition or cares for someone with it, everyone is welcome. It doesn't matter about age, religion or gender. I wanted somewhere where their common voice is heard and a place where Epilepsy doesn’t pull you down. This condition can be very isolating. I don't want anyone to feel like they are walking alone with this. What I have noticed is that the group is making people a lot more resilient. We can talk about anything and it is a lovely safe space. People know that if they do take a seizure then they are in safe hands and all is ok. It is nice that people have made friends and have people looking out for them. They should also be proud of themselves for having courage, being brave and attending the group that sometimes isn’t easy. The location is discreet and easily accessible.”

Joanne has been having seizures since she was eight years old but wasn’t diagnosed until later in life.

“When I have a seizure I explain it as ‘going for a wander’. I can look a bit drunk. The lights are on but nobody is in. It can be very scary and dangerous to deal with. I can have multiple seizures a day. A few years ago I took a seizure while in the middle of making a cup of tea. I burnt the skin off half of my hand. I completely blanked out and didn’t know I had done it. I didn’t know how long I had been out for and didn’t feel the pain of the burn until I came round.”

“When I have had seizures people have been great but then at times people avoided me. I started to think, will I even tell people I have Epilepsy. Then I started to wonder if I should warn them. In ways I feel sorry for the public that don’t understand Epilepsy. Not a lot of medical professionals can get their head around it so how can we expect the public to. Seizures can be scary to the general public if they don’t understand them. I think there is a misunderstanding out there surrounding Epilepsy. There are a lot of people who are suffering from Epilepsy who are fit to work and have achieved a lot in their lives.”

According to Epilepsy Action around 1,000 people die each year in the UK from epilepsy-related causes, including accidents, drowning, and suicide. Sudden unexpected death in epilepsy (SUDEP) is thought to account for up to half of these deaths.

In the UK, around 7 in 10 people with epilepsy can control their seizures with anti-seizure medication but for some people like Joanne who have refractory epilepsy where the medication doesn’t work it can be a scary place.

Joanne explained how she was “lucky” to be a candidate for surgery to help reduce her seizures. She underwent intensive brain surgery in 2019.

“The surgery has definitely helped, even though I still have seizures. Before the surgery the doctors were blunt at telling me I could die within the next few years. The type of Epilepsy I have is progressive and I was having so many accidents. It was scary so that made me want to go ahead and try the surgery. I have my children, they have watched me go through a lot over the years including the brain surgery. I was told that I would eventually be off my pills but 5 years later I am still on them. It has an awful effect on me. I am extremely tired. Having Epilepsy is a constant worry, sometimes I feel like I’m carrying two bricks on my shoulders. You are always thinking when the next seizure is going to be. I try my best not to worry too much because the surgery has given me the ability to set up the group and I have come so far. I try to look at it in a way that I have been through brain surgery so I can get through anything.

“Epilepsy is a very complex condition. It isn’t one size fits all. I think there needs to be more awareness which will in turn lead to more research on the condition. We need more support and donations for Epilepsy Action to make a difference.”

According to Epilepsy Action in Northern Ireland, one in 83 people have Epilepsy of which one third will not be able to be controlled with medication. NI has the highest prevalence rate compared to other regions in the UK. 1 in 1000 people with epilepsy die from SUDEP.

For more information on Epilepsy visit epilepsy.org.uk Epilepsy Action’s helpline number 0808 800 5050.

The Epilepsy Action Magherafelt Support Group takes place every second Thursday in the Magherafelt Parish Centre from 11am-12.30pm.

To book your place on the Magherafelt group visit bit.ly/4gRVU7L