RISKY BUSINESS: Toowoomba haemophiliac Scott White wants to see new and improved drugs to treat the rare condition become available and affordable.
RISKY BUSINESS: Toowoomba haemophiliac Scott White wants to see new and improved drugs to treat the rare condition become available and affordable. Tom Gillespie

'It's an invisible condition': Man talks haemophilia

SCOTT White has lived his life knowing a bump, knock, fall or even nothing at all can trigger severe pain and internal bleeding - but he's feeling confident about the future.

The Toowoomba man said he wanted people to take time on World Haemophilia Day today to consider those living with the rare blood condition.

Often misconstrued by people as an ailment that caused cuts to never heal, Mr White said haemophilia's biggest issues were when a "bleed" occurred inside the body and clotting didn't happen.

"It's probably one of those conditions that's hard to give a description because it is one of those invisible conditions, until you have a bleed," he said.

"That's all internal, whether it's joint or muscle tissue.

"It gets achy and then it gets hot in the area and then you start seeing the swelling."

Mr White is one of about 500 people in Australia living with Type-B Haemophilia, and was diagnosed by doctors as having a severe lack of clotting.

In some cases, a bleed has left him unable to work properly for days.

"All through my life, I'll get a bleed and it doesn't matter how quickly you rest it, ice and treat it, there are a few days where I have to rest," Mr White said.

But the trial of a new drug called Alprolix has reduced the severity of incidents, and Mr White said he wanted to see it become available and affordable.



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