At the recent national Conference in Sydney, some youth delegates took time out to share their experiences for the HFA Digital Stories project.
When he started primary school, Tim slowly became aware that other kids didn’t have haemophilia – or a port for their treatment. He talks about finding out that he was different, and getting involved in family camps, where there were a whole lot of people who ARE living with the same thing.
At swimming lessons, Sam was told to take off his MedicAlert bracelet. He describes what he learned when he took on the challenge of saying no and having to explain why.
As she grew older, Shauna started to realise that her body needed time to recover after a serious bleed – and that she just needed to be kind to herself. But with a good treatment plan and help from her doctors, this isn’t going to hold her back from doing what she wants.
There was no history of haemophilia in Lexie’s family, so when she started having major bruising as a baby, her parents didn’t know what was going on. Lexie describes her adventures at school and has some advice for other young people with bleeding disorders.
Tim, Sam, Shauna, Lexie and Hamish share stories from their childhood of being diagnosed, bruises and needles as children, going to camp and meeting other kids with bleeding disorders – playing (and sometimes avoiding!) sport and adventure activities, making friends and having fun. Their message to other young people with bleeding disorders: this hasn’t stopped me from doing anything I wanted to do.
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