A woman’s life took a drastic turn when she collapsed and lost sensation in her legs. Victoria Johnston, previously in good health, suffered a fall at work in spring 2022, leading to the sudden onset of paralysis. Over the following months, the 35-year-old underwent a series of medical tests that eventually revealed she had Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), an uncommon autoimmune disorder. This diagnosis had a profound impact on Johnston and her family in Milton Keynes, Buckinghamshire.
Forced to give up her successful cleaning business due to her deteriorating health, Johnston’s partner took on the role of full-time caregiver for her and their children. Despite the challenges, Johnston highlighted the need for faster CIDP treatment in the UK compared to the United States, where patients receive prompt care.
To educate others about CIDP, Johnston launched a TikTok page to share her experiences and provide support to those navigating life after diagnosis. With CIDP affecting around 650 people annually in the UK, timely diagnosis and treatment remain crucial for improved outcomes.
Johnston’s journey also revealed the complexities of CIDP treatment, as she faced a relapse that heightened her pain levels and worsened her paralysis. Amid ongoing medical monitoring and planned immunotherapy, she encountered the need for advanced treatment options available in the US.
As she adapts to her new reality, Johnston remains focused on raising awareness about CIDP through social media and advocating for better support for individuals with rare diseases. Despite the challenges, she finds solace in helping others and maintaining a positive outlook on her changed circumstances.