2015 marked the 17th Australian & New Zealand Conference on Haemophilia and Related Bleeding Disorders held on the Gold Coast. The youth session discussed being on the move, disclosure and safe risks, with Tim and Jade representing youth across Australia on the panel alongside a nurse, physio, and psychologist. In other sessions throughout the conference, several youth also shared their stories to parents, health professionals and the community about living with a bleeding disorder.
“I am very grateful to have the opportunity to speak on the panel and represent a female youth perspective. I loved the power of sharing stories and inviting casual conversation around issues such as sexual health, risk, and disclosure.
Not only did we have these conversations with the youth present at the conference but the session also attracted an older audience of parents and guardians that were keen to understand the difference in perspective.
Next time I hope to create even more of a discussion and help facilitate all youth and other participants to voice concerns, ask questions, and share stories.”
“I was asked to provide the perspective of a young male with haemophilia in the youth session but the great thing was that I was just one of many young people with a bleeding disorder in the room. I explained my experiences regarding travelling, transitioning treatment centres and moving into adult life but what I enjoyed most was what followed. I learnt so much from the youth session and the entire conference that I encourage all young men and women with bleeding disorders to attend next time if possible. I went into the youth session to share my knowledge and experiences and ended up learning more from the audience than they probably learnt from me!
I hope to see you all there next time.”
“It was brilliant to learn about the struggles and breakthroughs within our community, and getting to meet and hang out with others who not only understood what it was like to live with a bleeding disorder, but who also shared my passion for improving the ways in which we care for each other.
My personal highlight was getting to speak on a panel with Ty, talking about taking control of our lives with haemophilia.
If any of you out there have been tossing up whether or not to go to the conference I would seriously recommend it. It's an excellent opportunity to get to know the community that we are a part of and where we stand within it.”
“I enjoyed meeting other young and not so young people with haemophilia and hearing about their experiences. I especially enjoyed meeting up with other youth from across Australia, seeing old friends, and making new ones. Some of my favourite sessions included the youth session and how haemophilia can affect me and how to deal with the challenges, including the pain session, concerning the placebo affect and how our brains perceive pain.
I would definitely recommend any youth interested to attend. It was a great experience and I got to learn about our disorder, living with it, and the latest in advancements.”
“I learnt so much and met up with old friends and made some new ones too. There were sessions that catered to everyone’s needs and interest. I went to ones aimed towards youth and women with bleeding disorders, where I learnt more about my condition, possible treatments and heard other people’s stories about their problems and the hope they have for the future.
It was a wonderful experience and something I greatly recommend to other youth, because the knowledge you gain from the medical professionals and other people in the same situation as you is invaluable. It is also an excellent place to make friends who can understand what you’re going through.”
“This year I learnt about von Willebrand disease at the von Willebrand disease session. It’s something that I’ve wanted to know more about for a while so I have a better understanding of what is experienced by those with von Willebrand disease. It was also really interesting to hear the stories of 2 very different guys in the being active session, who shared their lives and how haemophilia has shaped the fine young men they have become.
The best part of going to the conference is hanging out with the other youth who all know what it’s like to have a bleeding disorder, cos we all do, we always have something interesting to talk about and we always have a really good time.”
“I found the session on the placebo effect to be the most informative, and I also learnt a great deal from the seminar on Family Planning.
The conference was a great experience to bond and learn with others living with bleeding disorders and I'm really glad I was a part of it.”