Life turned upside down for Victoria Johnston when she woke up one day and could no longer feel her legs. The once fit and healthy mum from Milton Keynes saw her world change in an instant. After falling at work in 2022, her legs gave way, leaving her temporarily paralysed. Initially, doctors suspected multiple sclerosis (MS), but after months of tests, she received a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a rare autoimmune disorder.
Victoria had to give up her successful cleaning business, and her partner became her full-time carer. Without proper treatment, CIDP is known to progress, often leading to severe disability, as Victoria knows all too well. She waited two and a half years for a full diagnosis, a time filled with uncertainty and fear, especially for her children. “To know I might have passed it to them was terrifying,” she shared.
Despite the challenges, Victoria launched a TikTok page to raise awareness about CIDP and share her journey to help others. She feels the UK lags behind countries like the US in treating the disorder, where patients receive quicker intervention. “I felt abandoned,” she said. Now starting on her ‘hellish’ immunotherapy treatment, Victoria hopes sharing her story will shine a light on CIDP.
It’s been a long and painful road, but Victoria is determined to find positivity. “If I can help others going through the same journey, that would make me happy,” she explained. Life may not look how she imagined, but she’s taking it day by day, proud of her kids, and finding new strength in each challenge. 💪❤️
Let’s spread awareness and show support for those living with underrepresented conditions. 🌍✨