A mother of two from Milton Keynes has spoken out after a rare autoimmune disease left her paralysed, following a delayed diagnosis that initially pointed to multiple sclerosis. Victoria Johnston, 35, collapsed at work in spring 2022, unable to feel her legs, and spent months undergoing tests before being told she had chronic inflammatory demyelinating polyneuropathy (CIDP).
Ms Johnston, who ran a cleaning business with her partner, said the condition deteriorated rapidly, leaving her reliant on her partner for daily tasks such as dressing and childcare. She described the experience as 'absolutely terrible', adding that she has gone from being fully independent to struggling with simple activities like going out for meals.
Despite initial suspicions of cauda equina syndrome or MS, a spinal consultant confirmed CIDP in October 2022. However, Ms Johnston did not receive a full diagnosis until November 2023, nearly three years after her collapse. She criticised the UK's approach to CIDP treatment, noting that patients in the US receive care much faster.
The mum, who has two children aged nine and 12, has since started a TikTok page to raise awareness about CIDP, hoping to guide others through life post-diagnosis. She also revealed that she received no information about the condition from doctors, leaving her dependent on her partner for support.
An estimated 650 people are diagnosed with CIDP in the UK each year, with many facing lengthy diagnostic delays. Ms Johnston urged for improved recognition of the disease, which she described as 'progressive' and 'eating away at your body'.
