Victoria's story

Elsie using her tablet
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I have a congenital myopathy, with a possible mitochondrial disease. I have a lack of physical strength and very severe muscle weakness. For example, I can’t get up from the floor without help, I find opening a bottle of water very challenging, and I am very prone to falls. I also used to get tired really easily. To help with this, I was prescribed with co-enzyme Q10 – this converts the food to give energy to the cells.

In 2012, while in the final year of university, I contracted Limbic Encephalitis. This is where the lining of the brain gets swollen, caused by either a virus or an autoimmune response where the antibodies attack the cells in the body. My limbic encephalitis was treated with steroids to reduce the swelling. This illness severely affected me, causing cognitive and mental difficulties. Since 2012, I have been taking medicine both to prevent seizures and to keep my mental health stable.

My endeavours – prior to the encephalitis – were to finish university, get a degree and secure a job. Despite the illness interrupting this, I was still awarded with a diploma in higher education.

Positive Outlook:

Recovering from this illness, whilst having the underlying congenital myopathy, was an uphill struggle. However, this gave me plenty of time to think, leading me to identify what I was really passionate about.

Being mixed, different languages are spoken in my family, which sparked my interest into learning different languages. I am actually pretty good at it.

Meanwhile, my mum passed away in November 2018, making me step up in my role of an older sister. From this experience, I have become more independent and this has given me the zest, motivation and drive to move forward in life. I now go to the gym regularly, I am learning Arabic, and socialising more – which in the past, proved to be very difficult, with the impairments from my illnesses. With this in mind, nothing is impossible in life; I have proved you can live a full life despite the challenges and difficulties. I have learned to adapt and have a positive outlook. I am now applying for training to be a cloud software engineer at Amazon web services.

My life with a neuromuscular condition in pictures

Victoria studying
Victoria in the US
Victoria at a restaurant
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