A woman faced a life-altering event when she collapsed and lost feeling in her legs. Victoria Johnston, previously in good health, suffered a fall at work in spring 2022, leading to paralysis. Following extensive medical assessments, she was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), an uncommon autoimmune disorder. This diagnosis forced her to close her successful cleaning business, shifting her partner’s role to full-time caregiver for her and their children.
Expressing frustration over delayed diagnosis and treatment in the UK compared to the US, Ms. Johnston highlighted the importance of faster care for CIDP patients. She has now turned to social media, launching a TikTok account to raise awareness about CIDP and provide support to others in similar situations. Despite the challenges, she remains determined to make a positive impact through sharing her journey.
The journey from the initial fall to the confirmed CIDP diagnosis lasted over two-and-a-half years for Ms. Johnston. The impact on her independence, family life, and career has been profound, with her partner stepping in as a full-time caregiver. Despite regular medical monitoring and planned immunotherapy treatment, she experienced a relapse that worsened her condition, emphasizing the urgency of effective treatment for CIDP patients.
Ms. Johnston’s experience also revealed the lack of awareness and understanding of CIDP among medical professionals, leading her to advocate for improved education and treatment options. She highlighted the need for early intervention and support to prevent long-term complications associated with CIDP. Through her social media efforts, she aims to shed light on the challenges faced by CIDP patients and offer a source of inspiration and guidance for those navigating similar struggles.