A charity gold day will be held in honour of Camiras Paul McMahon who died of amyloidosis on November 4 last year.Photo: Contributed
A charity gold day will be held in honour of Camiras Paul McMahon who died of amyloidosis on November 4 last year.Photo: Contributed Contributed

Family fights to stop more deaths from rare disease

PAUL McMahon had never heard of the disease which eventually took his life.

After two years of feeling unwell and being constantly misdiagnosed, doctors discovered the fit father of two had AL amyloidosis, a rare disease which affects the vital internal organs.

The passionate soccer player from Camira was diagnosed on Christmas Eve in 2014 and passed away at age 52, less than a year later.

His younger sister Bettina said if her brother was diagnosed sooner he may still be alive today.

This is why she and amyloidosis survivor Springfield's Neil Gibson have teamed up to organise the first Paul McMahon Memorial Charity Golf Day on November 4, the date he passed away.

"Most people have never heard of amyloidosis," Neil said.

"It is like leukaemia and goes through the blood stream, attaching itself to vital organs like the heart, liver and kidneys.

"It's a very gradual disease and can affect people of all ages."

AMYLOIDOSIS FACTS:

  • It is not a cancer but it is equally as serious
  • The disease is rare and is a consequence of abnormal protein (amyloid) deposits in body tissues and organs
  • Amyloidosis can occur as an isolated disease or as a result of another illness
  • Symptoms result from abnormal functioning of the organs affected
  • Diagnosis is made with a biopsy of involved tissue
  • There are more than 20 types of amyloidosis
  • Treatment options for amyloidosis depend on the type and involve correcting organ failure and treating any underlying conditions

Neil said, as someone in remission from the rare disease, he believed both doctors and the public needed to be more aware of amyloidosis.

"This disease is not new, people have been dying of it for years," he said.

"Most doctors don't even think of amyloidosis because it's so rare. They need to be more aware of it as well."

 

AWARENESS: Paul's sister Bettina Lumsden and Neil Gibson have organised the Paul McMahon (bottom) Memorial Charity Golf Day to raise awareness about amyloidosis.
AWARENESS: Paul's sister Bettina Lumsden and Neil Gibson have organised the Paul McMahon (bottom) Memorial Charity Golf Day to raise awareness about amyloidosis. Anna Hartley

Bettina agreed, saying the hardest part for her older brother was getting diagnosed.

"They thought it was food intolerances. He had digestive issues, he was lethargic and had flu-like symptoms for years," she said.

"He had to stop his work as a landscape gardener because he was so exhausted all the time.

"Unfortunately the disease mimics so many others that these are ruled out first.

"We are determined to raise awareness and to fundraise for research to find a cure for this rare and devastating disease."

The fundraiser will be held at Gailes Golf Club in Wacol on Friday, November 4 from 11am-5pm.

Individual registration costs $85 and a team of four can be registered for $340.

Tickets include 18 holes of golf, a shared motorised cart and a burger with chips.

To register email bettinamc@bigpond.com.



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