Youth stories from conference
Wed 4 Nov 2015
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.
Read about Tim & Jade’s story and being part of the youth session panel.
Stories from youth at conference
It was a welcome change to the usual dreary Melbourne weather to spend a few days by the sunny beaches of the Gold Coast, especially for another chance to meet up with others from the bleeding disorders community; many of whom I had not seen since the last conference.
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 to whom 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.
There were many opportunities to meet and exchange ideas with others from around the country and just generally have a fun time.
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.
Conference this year was a great experience in furthering my knowledge about my condition and meeting others living with haemophilia. 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. This played well in to the theme of facing the future together, with the conference focusing on new technologies for the prevention and treatment of bleeding disorders.
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. The youth panel was another point of interest. Once we got to the discussion portion a lot of interesting things were said about advocating and disclosure. 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. Outside of conference activities the youth had a great time at the beach, going shopping and just generally hanging out with each other. There was also a lot of laughing at the Dubsmash King’s antics and every time people stopped us and asked him for a photo.
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 really enjoyed the conference. We stayed at a lovely hotel right off the beach, and there were a lot of friendly people to converse with before and after sessions. The dinner was probably the best part where the youth got a great opportunity to bond. 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.