Olivia
About Me
Olivia is 29 years old and loves going out to lovely restaurants with her friends and family. She’s a real foodie and loves dressing up for a night out. Over the last four years, Olivia has become a real gym bunny which she attributes to her mum who has always been passionate about fitness and looking after Olivia’s health. She weight trains three days a week, joins a spin class once a week, and enjoys cardio on the StairMaster. Olivia finds that after completing cardio exercises, her balance improves, although the benefit is only short-lived. Finally, she loves travelling abroad, experiencing new cultures, and trying different foods.
My Diagnostic Journey
Olivia’s parents recalled that from around 18 months old, she started walking with a wide, unsteady gait, and it never really improved. Olivia also had low muscle tone in all her limbs. When she was two years old, doctors ordered a brain scan and found that her cerebellum was underdeveloped. At the time, the family was told that it shouldn’t have any effect on her future. However, Olivia struggled with activities at school and couldn’t take part in most physical education games. This often left her feeling quite excluded, and she did not enjoy school at all.
In 2023, when Olivia returned home after working on a cruise ship, she started falling a lot more. She was admitted to hospital and underwent a series of tests. This was when the family received the news that Olivia had a rare, progressive neurological condition called ARSACS; something none of them had ever heard of before.
My Message to the Community
Olivia states that she’s generally a very positive person and tries to live in the moment. She doesn’t spend a lot of time thinking about the future because, after all, nobody’s future is guaranteed. Olivia strives to keep busy and always has lots of plans in her diary to give her things to look forward to. She sometimes gets lonely, especially because she lives on her own. Olivia would love to share her life with someone and finds this is probably the hardest aspect of living with ARSACS for her. She hopes to find someone to accept her for who she is.
Counselling is something she has found to be extremely helpful. She does not like talking to her parents or friends about ARSACS because it can feel like a reminder of the condition and it’s difficult to discuss the more negative aspects of life. Nonetheless, Olivia continues to push her own boundaries. Last year, she took her first solo trip abroad, which made her feel incredibly free. She’s already planning another one!
Olivia’s biggest message to anyone living with ARSACS is don’t compare yourself to anyone else, everyone is different, and ARSACS affects people in very different ways. Reading too much about symptoms and possible outcomes isn’t necessarily helpful, because everyone’s journey is unique.
Hopes for the Future
Olivia’s biggest hope is that ongoing research will lead to either a cure or an effective treatment that can at least slow the progression of the symptoms. She also hopes that more can be done to raise awareness of ARSACS and help people understand this rare condition. Last year, Olivia’s parents organised a charity ball to raise money for ARSACS. They made sure that every chair had a leaflet containing information about the condition, helping to raise awareness as well as funds. The event raised £11,000 for the ARSACS Foundation in Canada, and she’s incredibly proud of what they achieved.