October 2002

Haemophilia support group heads for half century

By Leah Lonsdale

Levi, 3, is an adventuresome little boy.

He loves rolling and tumbling and playing games with his older brother BJ, 5.

Levi also has severe haemophilia.

‘When Levi started creche, some parents worried that their children would catch haemophilia,’ said his mother, Caroline.

‘I told them it’s not like the measles—haemophilia isn’t contagious.’

As haemophilia is usually inherited, a lot of people with the condition have other people in the family with it.

But haemophilia can be caused by a random genetic change.

Haemophilia is a rare bleeding disorder, affecting males, caused by not having enough—or faulty—clotting ‘factor’ in the blood.

This means that bleeding can be an issue.

‘A lot of people think Levi will bleed to death if he gets cut or scratched. But he won’t,’ said Caroline.

‘The problem with haemophilia is mostly internal bleeding, rather than external.’

These days, haemophilia is treated by injecting the missing clotting factor directly into a vein.

All children in Victoria have access to effective treatment and medical advice, usually at the haemophilia centre at the Royal Children’s Hospital.

Often this treatment is done regularly, so that the bleeds do not happen in the first place.

With treatment, boys like Levi can look forward to a ‘normal’ life.

Fifty years ago, the story was very different.

There was very little knowledge or treatment available.

Older men with haemophilia continue now to suffer the effects of years of bleeding into joints, resulting in chronic arthritis and other complications.

Since Levi’s diagnosis the family has learnt to live with haemophilia.

‘We believe that Levi is a boy first and his haemophilia is secondary,’ said Caroline.

‘Levi will have haemophilia all his life.

‘There is no cure and it will not just go away.’

Levi is one of 420 current family members of the Haemophilia Foundation Victoria (HFV).

HFV has been providing support and advocacy for those affected by bleeding disorders—and education for the public—for almost 50 years.

It is one of the oldest haemophilia groups in the world.

• For further information on haemophilia and related bleeding disorders, such as von Willebrand’s Disorder, call 9555 7595 or visit www.haemophiliavic.org.au.