16 May 2023

Canberra to turn red for the rampant disorder you've probably never heard of

| Travis Radford
Join the conversation
two men with brochures

Jeff Hobson (left) and John Payne have the same genetic disorder but use it to do good. Photo: Jeff Hobson.

Questacon, Telstra Tower and several other Canberra buildings and landmarks will be lit up red during the first week of June for World Haemochromatosis Week (Saturday to Friday, 1 to 7 June).

The global campaign raises awareness for haemochromatosis, a genetic disorder that causes the body to absorb too much iron and can lead to organ or tissue damage if left untreated.

It is the most common genetic disorder in Australia, with about one in 200 people of northern European origin inheriting the genetic risk for developing the disorder from their parents (one reason it is known as the ‘Celtic curse’).

Hemochromatosis Australia treasurer and Canberran Jeff Hobson was diagnosed with the disorder about 30 years ago after an initial misdiagnosis of hepatitis C by his GP.

The genetic disorder’s non-specific symptoms of general fatigue and weakness, weight loss, abdominal pain and joint aches mean the condition tends to go under-diagnosed.

READ ALSO Canberra nurse Kaela Graham-Bowman went from caring for cancer patients to becoming one

Once diagnosed, Mr Hobson began receiving venesections, a procedure similar to donating blood, which is done regularly until iron levels return to normal.

“I was attending Canberra Hospital on a weekly basis for about four or five months [to receive the venesections],” he said.

“I do recall one time they couldn’t find a vein so they ended up going to the back of the hand … and I came out of there and I was full of sweat. It was very painful.

“After [Canberra Hospital] got it under control, I finally got into [Australian Red Cross] Lifeblood, who do [venesections] on a regular basis now, as a therapeutic donor.”

Mr Hobson now only has to undergo the procedure once every three months and the upside of his therapeutic donations is his blood can be used to treat patients.

“It’s a win-win situation … you’re providing a blood product which can be used and can save roughly three people for each donation that we make,” he said.

He has made 110 recorded therapeutic donations but estimates he has made a further 40 unrecorded ones since he was diagnosed with the disorder.

For the past two years, Mr Hobson has been volunteering for Hemochromatosis Australia to raise awareness, hoping the condition can be identified before damage occurs.

A blood test can reveal whether a person may have the disorder, and a second genetic blood test can confirm whether the person has the disorder’s telltale gene mutations.

READ ALSO Health minister warns of fatal risk of flu to children, urges everyone to get vaccinated this season

Mr Hobson said he also wanted people to know that the disorder doesn’t only affect people in their 40s or older, as he was at the time of his diagnosis.

“In Canberra, we recently had a lady in her early 30s who was diagnosed with hemochromatosis,” he said.

“She had a brother who was aged 27. He was tested at the time when they found out she had it.

“They realised that he [also had it and] was starting to advance into damaging his liver.”

Mr Hobson encouraged others with symptoms or with family members diagnosed with the condition to follow suit and get tested.

The Canberra buildings and landmarks being lit up for all or part of World Haemochromatosis Week are:

  • Shine Dome, Academy of Science
  • John Gorton Building
  • National Carillon
  • Royal Australia Mint
  • Old Parliament House
  • Light-rail stations
  • Malcolm Fraser Bridge
  • Questacon
  • Telstra Tower.

If you’ve been diagnosed with hereditary haemochromatosis, resources are available from Haemochromatosis Australia.

Blood donors are invited to join the Haemochromatosis Australia Lifeblood team, or call the Haemochromatosis Australia infoline on 1300 019 028 to find out more.

Join the conversation

All Comments
  • All Comments
  • Website Comments
John Schwazer10:00 pm 21 May 23

Canberra turned red long, longer ago

Peter Graves12:14 pm 21 May 23

As well as those who are able to be therapeutic donors through being diagnosed with hemochromatosis, LifeBlood also needs “ordinary” donors – for many other reasons.

My emergency donation late one Saturday night in Canberra during May 1986 saved the life of a newly-born child.

I was diagnosed with it 15 years ago. Used to donate blood before that. Once I told Red Cross, they then made me get a letter from my doctor to be allowed to donate-even though it was normal allowed 3 month schedule. Cost me $100 each time to donate – so I stopped. Sure hope they have fixed that ridiculous policy.

There have been changes over time. Red Cross Blood Bank is now known as Lifeblood. A doctor uses the High Ferritin App to refer a person to the Lifeblood therapeutic donor program. Certainly no cost https://highferritin.transfusion.com.au

Capital Retro9:12 am 24 May 23

Same story here. I wasn’t made welcome there – I was told they weren’t there to do what GPs should do (venesections). Never been near the place since.

Sorry to hear that. Things are definitely different these days. I have found the staff at Lifeblood to be very caring and treat me no different than other donors. Would recommend to anyone with Haemochromatosis to have their doctor complete the App and refer to Lifeblood. The blood is used, and potential save 3 lives. Best wishes

Daily Digest

Want the best Canberra news delivered daily? Every day we package the most popular Riotact stories and send them straight to your inbox. Sign-up now for trusted local news that will never be behind a paywall.

By submitting your email address you are agreeing to Region Group's terms and conditions and privacy policy.