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Quick action was crucial for Jaclyn’s life with aHUS

rare diseases jaclyn patient story
rare diseases jaclyn patient story

Jaclyn Caisley went from being a ‘normal person with a normal life’ with no significant medical history, to living with a a life-threatening condition in just two weeks.


The ‘holiday blues’ quickly became laryngitis

In September 2013, Jaclyn Caisley entered the new school year as a young, impassioned teacher suffering from what she suspected as simply ‘the holiday blues’, yet this initial case of laryngitis happened to be the trigger to a life changing illness.

I woke up one day and I was yellow… I couldn’t stand up!

“You think ‘I’m 25, I’m just a bit sick!’” said Jaclyn. However, in a short period of time, while waiting for the results of general blood tests, her condition drastically worsened.

“I had been sick for two weeks straight. I woke up one day and I was yellow… I couldn’t stand up!”

A kidney biopsy showed just 3% kidney function

Having been rapidly transferred to the Urology Department, Freeman Hospital she underwent a succession of x-rays, blood tests, ultrasounds and a kidney biopsy where it was discovered she had just 3% kidney function.

The accumulative results lead to a diagnosis of Atypical Haemolytic Uraemic Syndrome (aHUS) of which she had no family history.

“I thought, how can I have something I have never even heard about? Everything happened so quickly; from being a perfectly healthy 25 year old to spending the next six weeks in hospital, barely able to stand and needing help to wash and dress,” said Jaclyn.

Outstanding treatment and rapid recovery

The recovery process involved just nine sessions of dialysis; crucially with the continued use and access to medication. “The medical care was outstanding. By January 2014, I had regained 30% of my kidney function and today that stands at around 80% of normal function. I was incredibly lucky to be diagnosed so quickly.”

…just a fortnightly treatment in the comfort of her own home.

Now back in the classroom, with just a two-hour fortnightly treatment in the comfort of her own home, Jaclyn has regained quality of life and hope for the future she never thought she would have. “That is what has made the difference to my future, my life and my health.”

With plans to marry in the Summer and continuing work at her secondary school, doing what she loves – Jaclyn admits “I never thought it would be like this…”.

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