Keira has lived with epilepsy since her teenage years, though formally diagnosed only recently. After having faced a lot of challenges due to her condition, she has been lucky to have found a housemate and close friend in Sarah.
Keira and Sarah have been living together for roughly 10 months, and in that time, Sarah has faced a big learning curve where Keira’s epilepsy is concerned. What was once a condition she knew very little about now occupies the very space in which she resides.
However, thanks to Keira’s willingness to be open about her condition and provide the relevant information, matched with Sarah’s enthusiasm to learn about epilepsy and support her friend, they have built a connection that has led them to team up in this year’s Walk for Epilepsy to raise further awareness and funds for those in need.
Keira was diagnosed with epilepsy in 2022, having experienced misdiagnosed seizures since her mid teenage years.
Keira: “These (seizures) were at times treated as panic attacks, side-effects of post-surgery complications, sinusitis complications, random fainting/drop attacks for unknown reasons. I had an EEG that came back normal as a teen and heaps of ECGs to check my heart.”
Experiencing tonic-clonic seizures and aware and impaired awareness focal seizures, Keira has many triggers, including lack of sleep, stress, lighting, illness and infection and temperature changes, among others.
Keira: “I’m not myself leading up to seizure – kind of like a walking zombie. I get this feeling leading up like I’ve felt this before or I feel it coming on but I never know if it’s my anxiety or if it’s about to go down. I get auras – usually my ears get worse tinnitus, loss of sensation of limbs, really hungry. Afterwards I get extremely emotional crying/outbursts. I don’t remember a lot of things I say or they just don’t make sense. I can’t talk sometimes for a little bit.”
Epilepsy has impacted Keira’s life significantly. She is constantly planning ahead and lives her life adapting day-to-day according to how she feels and the amount of sleep she has been able to get. Due to managing other illnesses on top of epilepsy, Keira has also been unable to work.
Keira: “I have been focusing on seizure stabilisation since my diagnosis last year and am unable to work, it’s affected my financial situation. It has impacted the way I can exercise safely. My mental health definitely takes a big toll and was heavily impacted coming to terms with the news but also pre/post seizure I get depressed for sometimes weeks. Not only did epilepsy impact all of this but also the loss of my driver licence for 12 months which took away a lot of my ability to live independently which I struggled with.”
In her spare time, Keira finds peace in cleaning the house and venturing out into the garden, as well as creative projects and, of course, a good Netflix series.
The Epilepsy Foundation has supported Keira in the development of an Epilepsy Management Plan, referrals to support groups and resources to enable her to learn more about epilepsy.
Keira: “I was assigned a support worker who would check in on me and how I was, answer any questions I had, point me in right directions if she couldn’t provide me with the answers I needed. They made me feel like what I was experiencing emotionally and physically was a lot and it was okay to feel how I did, very validating and made me feel less alone.”
Ten months ago, Keira was fortunate to find a supportive housemate in Sarah. Though Keira was initially hesitant to share information about her condition, Sarah embraced the opportunity to learn about epilepsy and how she could best offer support.
Keira: “The biggest learning curve for me was how upfront I needed to be to a potential housemate and giving them the best information without scaring them off, but also making them well prepared for a worst-case scenario.”
Sarah: “I had never really spent time with someone with epilepsy before and didn’t know anything about it other than there were seizures. I was so surprised to learn about a whole bunch of seizure triggers and that it doesn’t happen just randomly for Keira. She was brilliant that when I moved in there was a two-page guide on her triggers, emergency contact numbers and what to do if she has a seizure stuck to our fridge. She’s only had one seizure in front of me and it was an intense experience jumping in to help as soon as I realised.”
This year, Keira and Sarah will be participating in the Walk for Epilepsy. Their team, ‘Shake It Off’, named in homage to the girls’ love of puns and Taylor Swift, is looking to raise $2,000 and is open to anyone to join.
Keira: “For me personally it really hits home. I wasn’t educated prior to knowing this. I knew I had these fainting/drops that I always thought were seizures but kept being told no and having my heart checked. I think if I knew more myself I would’ve pushed harder for answers and stood my ground more to be heard all those years. The Epilepsy Foundation was there in a dark time for me and I just think there are so many more people like me in a similar circumstance daily that need the help. (The Walk for Epilepsy) is something I can do to pass on the baton.”
Sarah: “If going for a walk helps to raise awareness and funds to support people living with epilepsy, it seems like a pretty simple way to get involved and help my mate… and a great excuse to go for walks to get coffee. I’m sold.”
Keira: “Honestly do it. Last year I was really struggling to stabilise my seizures, struggling with anxiety to leave the house with fear of something happening. It gave me an excuse to push myself to leave the house and exercise for a great cause.”
Support people living with epilepsy, like Keira, by registering for the Walk for Epilepsy. Visit https://www.walkforepilepsy.org.au/0AC34C to register.