What is CIDP and how does it affect Victoria Johnston?

CIDP is a rare autoimmune disorder causing progressive nerve damage. Victoria Johnston experienced paralysis, significantly impacting her mobility and daily life.

How long did it take to diagnose Victoria Johnston with CIDP?

It took Victoria Johnston nearly three years to receive a full diagnosis for CIDP after her initial collapse.

What support is available for CIDP patients in the UK?

Victoria Johnston highlights a lack of immediate information and support for CIDP patients in the UK and advocates for faster treatment pathways.

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Paralysed by Rare Disease: Woman's Long Battle

5 Jan

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Summary

A rare disease left Victoria Johnston paralysed and her life drastically altered.
Diagnosis for CIDP took nearly three years, impacting her family severely.
Johnston advocates for faster CIDP treatment, comparing the UK to the US.

Paralysed by Rare Disease: Woman's Long Battle

Victoria Johnston, a 35-year-old mother, experienced a life-altering event in spring 2022 when she collapsed at work, leading to paralysis in her legs. After extensive medical examinations, she was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a rare autoimmune disorder.

This diagnosis dramatically impacted her family; she had to abandon her thriving cleaning business, and her partner became her full-time caregiver. The full diagnosis of CIDP, an uncommon progressive disease, was confirmed nearly three years after her initial collapse in November 2025, leaving her dependent on her partner for daily tasks.

Johnston now advocates for quicker CIDP treatment, drawing parallels with the US system, and shares her experiences on TikTok to support others. She highlights the significant impact of the disease, noting that one in three people face permanent paralysis if treated late, and expresses a desire for improved patient support and faster access to care.