Personal stories Archives - Haemophilia Foundation Australia

Being rare

19 June 2025

Boys, Girls, Growing up with a bleeding disorder, Personal stories, Rare bleeding disorders, Young people
boys, factor X deficiency, girls, haemophilia, VWD, Youth

What’s it like to grow up with a very rare bleeding disorder? Some of our community members talk about their experiences.

Being rare

Adam, Bel and Tayla -
26 March 2025

Boys, Girls, Growing up with a bleeding disorder, Personal stories, Rare bleeding disorders, Young people
haemophilia, rare clotting factor deficiencies, VWD, Youth

Adam, Bel and Tayla share their experiences of growing up with a very rare bleeding disorder and what they learned along the way.

Growing up with VWD

18 December 2024

Cassie's personal story of growing up with von Willebrand disease (VWD) and learning to manage her heavy periods.

Growing up with VWD

Cassie -
11 December 2024

Cassie's personal story of growing up with von Willebrand disease (VWD) and learning to manage her heavy periods.

Jack’s latest travel adventure

17 October 2024

Boys, Personal stories, Travel, Treatment & care, Young people
adventure sport, haemophilia, travel, treatment, Youth

Jack shares his travel adventures in Canada and the USA - snowboarding and managing haemophilia on the road with new treatments.

Parenting a teenager with a rare bleeding disorder

Elizabeth -
11 September 2024

Elizabeth shares her experiences of parenting her teenage daughter Grace who has Glanzmann thrombasthenia, a rare hereditary platelet function disorder.

Jack’s latest travel adventures

Jack -
11 September 2024

Boys, Haemophilia, New treatments, Personal stories, Travel, Young people
adventure sport, haemophilia, travel, Youth

Jack talks about his travel adventures in Canada and the USA, snowboarding and managing haemophilia on the road with new treatments.

Youth taking on the future

27 June 2024

Ben talks about the Blue Shirts youth leadership program, his experiences and hopes for the program.

Catching up with youth

27 June 2024

Declan and Bailey talk about catching up with other young people at a gaming bar and what made it fun.

Paul talks about his career

12 June 2024

Paul shares his experience working as an apprentice shipwright and boat builder, a FIFO WHS manager, and today supporting his brother in a business with over 60 employees and a growing client base.

Items tagged 'Personal stories'

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