Growing up with a bleeding disorder 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.

Navigating challenges at school

Emma Wells -
11 December 2024

How to deal with problems at school if your child has a bleeding disorder like haemophilia, von Willebrand disease (VWD) or other rare bleeding disorders.

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.

Heavy menstrual bleeding in teenagers

Jaime Chase -
11 September 2024

When and how to seek help for adolescent girls with bleeding disorders when they have heavy periods.

Claire shared her personal story as a parent of young boys with haemophilia at the 21st Australian Conference on haemophilia, VWD and rare bleeding disorders. This is a transcript of her presentation.

Shauna – sharing her life experience living with a bleeding disorder

19 July 2023

Tell us a little about your bleeding disorder I have severe Type 3 von Willebrand disease. Essentially my blood doesn’t…

Chris shares his inspiring story of following his passion

19 July 2023

What if you are passionate about playing Australian Rules Football, but have severe haemophilia? How can you keep doing something…

Items tagged 'Growing up with a bleeding disorder'

Being rare

Being rare

Growing up with VWD

Growing up with VWD

Navigating challenges at school

Parenting a teenager with a rare bleeding disorder

Heavy menstrual bleeding in teenagers

Hopes for the Future

Shauna – sharing her life experience living with a bleeding disorder

Chris shares his inspiring story of following his passion

Items tagged 'Growing up with a bleeding disorder'

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