Particle.news
Download on the App Store

UK Mother With Rare Nerve Disorder Faces Modified Treatment After Relapse

A diagnosis of CIDP arrived nearly three years after her collapse, leaving the family reliant on a carer.

Overview

  • Victoria Johnston collapsed at work in April 2022 and, after months of tests and initial suspicions of other conditions, received a full CIDP diagnosis in November 2024.
  • She reported a relapse in June 2025 that worsened paralysis to roughly 75% in her right leg and 50% in her left, with episodes of severe pain.
  • Clinicians planned intensive immunotherapy with a multi‑day induction and ongoing three‑weekly maintenance but now suspect a rarer CIDP variant that may require a different regimen.
  • The illness and diagnostic delay forced the closure of the family cleaning business as her partner, David McReynolds, became a full‑time carer and their two children moved to homeschooling.
  • Johnston has launched a TikTok account to share information on CIDP and says patients in the United States are typically started on treatment within six months.