Epilepsy group founded by Leeds woman attracts celebrity supporters including Gogglebox's Shaun Malone
Chloe Milburn was diagnosed with epilepsy at the age of six and began to experience seizures daily during her high school years.
Living with the condition meant she had a “quite chaotic” childhood and it has often been hard to maintain long-term employment, but a project begun in her mid-20s has given Chloe a way to connect with others around the world who really understand the challenges that she faces.
Around eight years ago, Chloe set up a Facebook group called No Cause, No Cure, Epilepsy Awareness to give others living with the condition a place to gain advice and support. Today she considers the network of more than 2,200 people to be “one of her biggest achievements”.
The 32-year-old, who lives in Wakefield, said: “I just set it up because I realised that when I was younger I didn't really have anywhere to kind of like turn to and obviously they didn't have social media when I was younger. I thought it might be better if that if they had a group where people could talk to each other and they could say, ‘Oh, look, I've got this kind of seizure today’ and whatever.”
As the group has steadily grown, famous faces including Shaun Malone from Channel 4 show Gogglebox, David Schaal from the sitcom Inbetweeners, Barry Pearl from the 1978 film Grease and Leeds Rhinos player Jarrod O'Connor have got involved. Many of the celebrities who are part of the group send videos that Chloe has researched and scripted about epilepsy. These can range from first aid guides to facts about the condition, with the aim being to raise wider awareness.
For Chloe, living with epilepsy meant she had a very different childhood in some respects but her parents made every effort to ensure that she still had some normality in her day-to-day life too. “It was quite chaotic but I didn't let it get to me,” she said. “I was very fortunate with parents who let me have a normal childhood. I did normal things like I still played on the streets with my friends, so I've been very blessed with that.”
Her interests at the time were in archaeology and she hoped to pursue it as a career, but soon realised that attending university might not be possible for her due to her condition. Instead, Chloe opted to work part-time and has held a number of roles including in retail and offices – but often they haven’t lasted for long.
“I have lost a lot of jobs because of my epilepsy and a lot of people struggle to understand how I can take in information and they'll think that I'm slow,” she said. “So when it gets to the three months’ probation, they get rid of you and it's really quite hard to keep up to a job. But actually, I am trying to do everything. I'm even at home Googling things. It's really, really hard and I just think people need to be more aware of it.”
Chloe’s health has worsened in the past year or so and she has begun to experience seizures in her sleep. As well as having an impact on her hopes of finding work, it has led her to make the decision not to have children. She said: “Me and my husband made that decision due to medication I’m on. I've had to switch medications throughout the years – and it was hard. It's hard for me seeing my friends have children and things like that. But the thing is I've been blessed being like an aunt, so it's lovely that I get to treasure them instead.”
Helping to bring others with epilepsy together through her Facebook group is another source of joy. "It feels pretty amazing”, said Chloe. “It's just lovely to see that lots of people are dedicated to helping. I do love my group. To anybody out there who has epilepsy, or knows anybody with epilepsy or basically even just wants to know about it, just know you can join the group. I want people to know that they're not alone.”