Epilepsy is the most common neurological condition, after strokes, with around 600,000 people across the UK affected. People with epilepsy learn to manage daily life with the condition in different ways, and when Gulnara Leslie was diagnosed in her late 20s, she was worried life as she knew it would never be the same.
In 2008, care-worker Gulnara was pregnant with her first child and started to find small droplets of blood on her pillow. Initially ignoring the bleeds, it wasn’t until Gulnara’s husband, Ian, found her having a seizure at home that she was admitted to Aberdeen Royal Infirmary. At the age of 27, Gulnara was diagnosed with epilepsy. Nurturing her new born baby, she was left worried about the impact this would have on the level of care she would be able to provide and also her interaction with the wider world.
Over the next few years, unfortunately, Gulnara’s epilepsy worsened with the seizures becoming more severe and leaving her unable to speak. For a number of years, afraid of having a seizure in public, Gulnara locked herself away from the outside world and managed the condition with help from her husband and local health team.
She said: “Looking back to that time, it was a very dark place where I had very little interaction with friends or my wider community. I didn’t return to work for many years, so it left me feeling completely detached from real life and instead trapped in a bubble of my own home, getting to a stage where I was afraid to leave the house at all.
“Before my diagnosis, I had been an outgoing and social person. It was as if a switch had been flicked and I no longer wanted to socialise or meet new people. I felt safer in the comfort of my own home in case I had a seizure. Caring for a small child is also difficult without the added stress of coping with a new-found illness, so it was a very isolating position to be in and I didn’t know who I could turn to for support.”
It wasn’t until Gulnara was introduced to her local Epilepsy Outreach Worker through Scottish health and social-care charity Quarriers, that she started to gain confidence. This dedicated service provides support to people across the north-east of Scotland who are living with epilepsy as well as those who support them.
Gulnara said: “Before meeting with my dedicated support worker, Lorraine, I was nervous. I hadn’t confidently left home for years and this seemed like a big step to take, but I knew I couldn’t continue living how I was – for the sake of myself or my family.
“As clichéd as it sounds, as soon as I met with Lorraine, my life changed. Instantly I felt like I had a connection with someone who understood my day-to-day challenges and could provide individualised support.”
Now age 40, Gulnara continues to meet with Epilepsy Outreach Service users on a weekly basis, participating in a range of social activities across the north-east of Scotland which has dramatically improved her social skills and helped her to regain confidence.
Gulnara said: “I’d encourage anyone who’s feeling isolated to find out what support groups are available in their local area. My diagnosis left me feeling lonely and trapped for too long, but the work of Quarriers opened up a new community of people who understood the barriers I faced and helped me realise that there is no need to shy away from life whilst living with epilepsy.”
Quarriers also operates Scotland’s only residential assessment and treatment centre in Scotland for adults – The William Quarrier Scottish Epilepsy Centre. The independent hospital provides unique epilepsy services to patients and clinicians and has supported hundreds of people across Scotland and beyond living with epilepsy since it was established in 2013.
For more information about the Centre, visit: https://www.quarriers.org.uk/epilepsy/
