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Moray sisters suffering same rare disease bid to put condition in spotlight

Irene  and Trisha
Irene and Trisha

Two Moray sisters suffering from the same rare disease are on a mission to bring the little-known condition into the spotlight.

Irene Ferguson, 63, was diagnosed with Primary Biliary Cholangitis (PBC) in 2009 and doctors feared she would be dead within five years.

The liver condition affects just one in 400 people, 90% of whom are female, and can often lead to patients requiring liver transplants.

Mrs Ferguson’s mum had the disease, and two sisters and a cousin also suffer from it.

Its symptoms include severe tiredness, chronic itching, joint pain, and dry eyes and mouth – but even among medical personnel little is known about it.

Mrs Ferguson, who lives in Buckie but is originally from Stonehaven, had been living with PBC for years before the cause of her misery was identified.

It was only when her sister Trisha Cowie – who was experiencing similar symptoms – was diagnosed with the illness that Mrs Ferguson sought the blood tests necessary to confirm that she too had it.

At that time, her GP warned her that she had between three and seven years to live – and her diminishing muscle mass meant she had to take early retirement from her job as a nurse.

However, she is one of the fortunate 50% whose bodies respond to a drug designed to slow the condition’s progression – and she hopes that by maintaining a healthy lifestyle she will live many more years.

However, PBC is now destroying Ms Cowie’s red blood cells, and she has to undergo fortnightly iron transfusions to combat its affects.

Today marks rare disease day across the UK, and Mrs Ferguson is eager to highlight the disease in an effort to help others who may have it.

She said: “Even though it turned out that my mum had PBC too, it was only when my sister was told she had it that we learned about it.

“The first consultant I saw gave me five years to live, at most, but with the medication and by looking after yourself I should be lucky enough to live much longer.”

Mrs Ferguson stages regular car boot sales to raise awareness of the disease, and holds meetings in Elgin for other sufferers.

The next gathering will take place in the New Elgin Hall on Thursday, April 7, from 2pm to 4pm.