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Benalla to raise awareness of genetic disease

A community event will be held next Wednesday to recognise Haemochromatosis Awareness Week.

MONIQUE FREER August 13, 2014 3:25am

Haemochromatosis sufferer Judi McDonald and Benalla Health community health nurse Deborah Smith are part of a team hosting an event for Haemochromatosis Awareness Week.


Judi McDonald never thought that a genetic disorder would land her a starring role in a movie.

The Benalla resident suffers from haemochromatosis, or inherited iron overload disorder, which causes the body to absorb excess iron.

Fellow haemochromatosis sufferer and famous film director Paul Cox was recently inspired to make a short film about the disease and the work of Haemochromatosis Australia, and asked Ms McDonald to feature in it.

‘‘Haemochromatosis has many different symptoms and we’re each doing one symptom in the film,’’ she said.

‘‘I’m doing the stomach pain variety.’’

This week is Haemochromatosis Awareness Week and a community information session will be held next Wednesday to mark the occasion.

Along with a screening of Mr Fox’s film, Haemochromatosis Australia president Ben Marris and Ms McDonald will speak about their experiences.

In 2006 when Ms McDonald was at her uncle’s 80th birthday celebration, she purchased a family history book from a long-lost cousin and, in the first few pages there was some information about a genetic family disease called haemochromatosis.

It was not until she came across the information that Ms McDonald went back to the doctor armed with her own self-diagnosis, and tests revealed she had the disorder.

The build-up of iron in sufferers affects the organs and joints and eventually can become toxic.

Early symptoms include joint pains, fatigue, weakness and sexual dysfunction and if left untreated it can cause potentially fatal symptoms such as diabetes, liver cancer and cirrhosis, heart failure and osteoarthritis.

Although one in 200 people are genetically predisposed to haemochromatosis, Ms McDonald said it was not well known.

Ms McDonald experiences joint aches and pains and extreme fatigue, however she has learnt to manage the disorder and is now an advocate for Haemochromatosis Australia.

‘‘My aim is try and inform as many people as possible about haemochromatosis; if left untreated you may end up on the organ donor list,’’ she said.

‘‘Check your family tree; if you have relations from England, Ireland or Scotland and have unexplained joint pain or chronic fatigue, think about it and get tested.’’

A free information and support session will be held at Benalla Community Care on Wednesday, August 20, between 6pm and 8pm.

For more information or to RSVP phone Haemochromatosis Australia on 1300019028.

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