A rare disease left a woman paralyzed, overturning her life as she battled a misdiagnosis of MS. Victoria Johnston, previously in good health, lost feeling in her legs after a fall at work in spring 2022. After months of medical tests, she was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), an autoimmune disorder.
Living in Milton Keynes, Johnston had to close her cleaning business and rely on her partner as her full-time caregiver for their kids. She believed the UK could improve CIDP treatment timelines compared to the US. Johnston now educates others through a TikTok page about CIDP.
With approximately 650 new CIDP cases annually in the UK, full diagnoses often take years. Johnston wished for an MS diagnosis due to CIDP’s rarity. She received minimal information about CIDP post-diagnosis, increasing her reliance on her partner for daily tasks.
Johnston’s journey involved a delay in her CIDP diagnosis, affecting her independence and lifestyle drastically. Her physical decline led to her partner becoming a full-time caregiver. Regular reviews and immunotherapy treatment were planned, but a relapse worsened her condition, causing severe pain.
Educating medical staff about CIDP, Johnston faces a challenging treatment regimen. Doctors suspect a rarer CIDP variant, requiring specialized care. Despite struggles, Johnston aims to raise awareness through TikTok and support others in similar situations.
The impact of CIDP has altered Johnston’s career, family life, and plans for the future. Adjusting to a new normal, her children struggle to understand her limitations. Acceptance and adaptation have become crucial in her journey, with her family making sacrifices to accommodate her needs.
