A young man in black T-shirt stands in front of an exterior wall made from wooden cladding.

Louis’ Neurofibromatosis 1 story: “The Brain Charity has really helped me get in a better place”

The 26-year-old says the charity’s counselling sessions helped him realise he’s not on his own

Louis lives with Neurofibromatosis 1 (also known as NF1), a genetic condition which causes tumours to grow along his nerves. While the tumours are usually benign, he can sometimes experience pain, among various different symptoms.

Louis has received employment support and counselling through The Brain Charity. He tells us the counselling has helped him grow in confidence and manage his mental health. 

When Louis was just 3, his parents noticed something wasn’t quite right and took him to the doctors. Louis had a tumour wrapped around the main artery to his brain, closing his airway. He was given emergency surgery and diagnosed with NF1.

After the operation the tumour grew back quickly and he continues to live with tumours – including in his leg which affects his mobility. Louis also has brittle bones, and has previously broken his femur by falling over. 

In 2016 Louis began experiencing pain in his leg and lower back, which was initially dismissed as part of his condition. It was only when Louis got a second opinion that he was diagnosed with two life-threatening tumours on his spine.

“They said if I hadn’t pursued a diagnosis, I would have been paralysed, or even died. I didn’t have a choice other than to do surgery, although the risk was high.”

During his recovery, Louis struggled with his mental health and “locked himself away” as he “didn’t like going out at all at the time”.

Following recovery, Louis was struggling to find a job. He said: “I was in a really dark place and didn’t think I was getting anywhere.”

Louis was told by family members about The Brain Charity, who encouraged him to get in touch and see what services could support him.

He said: “I was nervous at first as I felt I’d been labelled as someone with a ‘disability’ and had been made to feel different. I was scared about coming here but it was the best thing I’ve ever done.

“Everyone is treated normally, no one is treated any different. Coming here was one of the best things I’ve done, I wish I’d done it earlier. I’ve made good friends, everyone is really approachable – everyone has got their own story.

“It’s nice to speak to someone and to know that you’re not on your own, you’re not the only one. Counselling was really good. It was good for me to have someone to speak to and it helped me through problems I was dealing with at that time.”

Published: 24 January 2024

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