A young mother's life was shattered in an instant when she collapsed at work, suddenly unable to feel her legs. Victoria Johnston, then 32 and running her own business, found herself paralysed without warning in the spring of 2022, beginning a gruelling three-year medical odyssey.
A Sudden Collapse and a Long Road to Answers
In April 2022, Victoria stepped out of a door at her workplace and her legs gave way. She was temporarily paralysed for about half an hour and never fully regained feeling in her right leg. Initial tests pointed to serious spinal issues, including two slipped discs and spinal stenosis, but the true cause remained elusive.
Months of tests followed, including MRI scans and nerve conduction studies. It wasn't until October 2022, over six months after her collapse, that a spinal specialist confirmed she had Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a rare and progressive autoimmune disorder. Her full, detailed diagnosis, however, would not come until November 2024.
Life Turned Upside Down by a Rare Disease
The diagnosis transformed family life overnight for Victoria, her partner David McReynolds, and their two children, Myia and Willow, in Milton Keynes. The once-independent business owner became reliant on her partner for basic tasks like getting dressed. David had to give up work to become her full-time carer, and both children have been homeschooled for the past year.
"I'm reliant on my partner to get dressed and look after the kids," Victoria said. "It's not just my life, it's my partner's and my kids' lives that are affected as well." She described the guilt of feeling she had failed her children and the grief for the future they had planned, including travelling when the kids were older.
Treatment Delays and a Plea for Change
Victoria's experience highlighted stark differences in healthcare approaches. She discovered that in the United States, CIDP patients often start treatment within six months. In the UK, she faced years of waiting and felt "abandoned and unsupported." She received no information, not even a leaflet, upon diagnosis.
Her condition deteriorated, and a relapse in June 2025 left her in excruciating pain with significant paralysis. She now faces a lifelong regimen of immunotherapy. Shockingly, during a hospital visit, she had to educate staff about CIDP, as they initially wanted to place her in a stroke unit.
To help others, Victoria has launched a TikTok page to raise awareness of CIDP, which affects around 650 people in the UK each year. She hopes to guide others through the isolating journey she has faced and advocate for faster diagnosis and treatment, turning her personal struggle into a force for positive change.
