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Haemophilia: expected to live for just 12 years

GAVIN Finkelstein, president of the Haemophilia Foundation Australia, at just six-weeks-old was diagnosed with Haemophilia A.

“When I was born, life-expectancy of someone living with Haemophilia A was 12-years-old,” Mr Finkelstein said.

“When I was circumcised as a young baby, I continued bleeding.

“My grandfather, a GP, was suspicious and he wouldn’t stop until he found an answer to the problem and I was diagnosed with haemophilia.”

This week, 10-16 October, is Bleeding Disorders Awareness Week.

It presents an opportunity for individuals, families, and blood disorder-related organisations to raise awareness of the many forms of bleeding disorders throughout the country.

Six thousand five hundred Australians are diagnosed with haemophilia, von Willebrand disease or other inherited-related bleeding disorders each year.

Mr Finkelstein said that living with Haemophilia A, which causes a person to bleed more than normal after an injury, has been both an imposition and a problem at different stages in his life.

“For one thing, not being able to play sport, and I love sport,” he said.

“Not being included in physical activities when I was growing up was always an issue.

“It was hard to take; I tested my boundaries on numerous occasions when I was younger, but I paid the price for it.

“Living with a bleeding disorder also gives you an appreciation of all the little things in life.”

Mr Finkelstein believes things have gotten better over the years; the life expectancy of people living with haemophilia is now normal.

“Compared to what it was when I was younger, we’ve got nothing or very little to complain about,” he said.

Mr Finkelstien is currently on a preventative clinical trial to treat his haemophilia where he injects himself in the stomach every 30 days.

“It’s a simple treatment that takes about 30 seconds,” he said.

“It’s easy, and it gives me great coverage.

“It’s worlds apart from what I was being treated with when I was a kid.

“The future is really bright for families with people and kids living with bleeding disorders.”

He said research into gene therapy, which is basically a cure for haemophilia, is very exciting and is a totally different paradigm.

“The research into bleeding disorders is chalk and cheese to what it was when I was growing up.”

He believes the federal government could do more when ‘game-changing’ products to treat bleeding disorders become available on the international market.

“There is a significant time-lag; years before we get access to them in Australia,” he said.

“That’s the one thing that really does annoy us.”

Executive director of Haemophilia Foundation Australia Sharon Caris, said the foundation has played an important role in advocating for treatments for bleeding disorders, which have improved quality of life for many Australians.

“We want to make sure that people living with a blood disorder have the care and support they need,” she said.

Ms Caris said Blood Disorders Awareness Week is a great time to engage with the bleeding disorders community and the general community.

“We certainly engage with the community, but one of the things we’re encouraging our members to do during the week is to cook little red cakes to not only raise awareness but raise much-needed funds for HFA,” she said.

Ms Caris also mentioned if anyone wanted to make a donation to support the bleeding disorders community, they could visit HFA’s website, and click on donate.

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Ryan Fritz

Ryan Fritz started The Advocate in 2014 to provide not-for-profits and charities another media platform to tell their worthwhile hard news stories and opinion pieces effortlessly. In 2020, Ryan formed a team of volunteer journalists to help spread even more high-quality stories from the third sector. He also has over 10 years experience as a media and communications professional for not-for-profits and charities.

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