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When Winning The 'Bone Marrow Lottery' Is The Only Way To Survive

Why aren't more Australians signing up to this life-saving registry?

When Gennaro Rapinese was diagnosed with acute myeloid leukaemia the first time, it was a gruelling process of chemotherapy, temporary blindness, and a few close shaves with infection before he was declared in remission.

Three years later, when the blood cancer came back a second time, the father-of-three said the news was like a punch in the gut.

“I just pretty much collapsed on our kitchen floor,” Gennaro told The Sunday Project.

“Just sort of crouched down and went oh God, we have to go through this again.”

Gennaro, his wife Joanne, and their three children. Photo: Supplied.

Gennaro was told his cancer was "significantly" more serious, and this time, his immune system "wasn't going to do the job". Put simply: he needs a bone marrow transplant, or he'll die.

“If I don’t find a match, I’m a dead man walking,” Gennaro said.

Bone marrow transplants require a perfect genetic match. About 30 percent of patients have a sibling who is able to donate, but sadly none of Gennaro's three sisters meet the criteria.

He's now entered into what is essentially a 'bone marrow lottery', with a search to find a genetic match somewhere in Australia, and -- if that fails -- the world.

Gennaro needs a bone marrow transplant, or he'll die. Photo: Supplied.

Part of the issue in finding a donor is that ethnicity plays a huge role, said Paul Berghofer, who oversees bone marrow donation centres across the country for the Australian Red Cross Blood Service.

"We have essentially got an over-representation of people from a northwest European background on the registry, and conversely an under representation of all other ethnic backgrounds," Berghofer told The Sunday Project.

People who regularly donate blood may be reluctant to register as a bone marrow donor because of a misunderstanding that the process is painful -- one of the most common misconceptions about it, according to Berghofer.

"It's not as scary or as painful as what most people would be expecting," he said.

In 80 percent of cases, the process is done in the chair like a blood donation, with any pelvic bone insertions involving general anaesthetic.

Gennaro is encouraging anyone who can donate blood to also sign up to be a bone marrow donor. Photo: Supplied.

In fact, because finding a genetic match is so rare, only one in 1,500 people who sign up will be asked to donate per year. But if you are asked -- you could save a life.

"You don't have to be a fireman, a policeman, or a doctor to be a lifesaver," Gennaro said.

"You've just got to go and give a little bit of blood."

To watch Gennaro Rapinese's full story, tune into The Sunday Project this Sunday at 6.30pm. 

To find out more about bone marrow donation, head to the Australian Red Cross Blood Service.

Contact the author: abrucesmith@networkten.com.au