A rare disease

Published February 4, 2025

IN December 2023, I was diagnosed with a rare and debilitating condition called cauda equina syndrome (CES). Back pain had been a long-standing issue for me, but the ‘red flags’ of CES were alarming and disorientating. I experienced sudden, severe lower back pain, numbness in my lower body, and a terrifying loss of control over basic bodily functions. I underwent surgery at a hospital in Karachi about three days after the onset of symptoms.

Other than my own troubles with the disease, what surprised me the most was the lack of general awareness about the condition. For almost 20 years, I had served in the National Highways and Motorway Police (NHMP), often performing gruelling patrol duties.

However, when CES struck, continuing these duties became impossible. Paralysed from the waist down in the initial stage of my diagnosis, I had no choice, but to take medical leave. Despite explaining my health condition to an Islamabad-based human resource official, I was instructed to report to the headquarters; a task that was physically impossible at the time. This interaction highlighted a broader issue: the lack of understanding and empathy surrounding CES.

CES occurs when the bundle of nerves at the base of the spinal cord — the cauda equina — becomes compressed. This compression can result from a herniated disc, trauma, tumours or infections. The condition is considered a medical emer-gency because, without prompt surgical intervention, it can lead to permanent paralysis, incontinence and other severe complications.

The warning signs of CES, often referred to as red flags, include severe lower back pain, saddle anaesthesia (numbness in the area that would sit on a saddle), bladder or bowel dysfunction, and weakness or numbness in the legs.

While the initial diagnosis was devas-tating, I have learned to navigate life with this condition. Public education is vital to ensure timely diagnosis and treatment. Let us work together to spread awareness to ensure no one faces the same confusion and lack of support that I encountered.

Sajid Ali
Kamber Ali Khan

Published in Dawn, February 4th, 2025

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