Youth at the WFH Congress
Mon 14 Jul 2014
The weekend before the WFH 2014 Congress with Purple soup was amazing – I love meeting new people with either haemophilia or other bleeding disorders. The Congress has given me a lot of information on many other things that I could do in life. I learnt a little bit more about Von Willebrand disorder and it was nice to talk to those girls to try and understand a little bit about their bleeding disorder. The Congress sessions gave me a little bit of information to take home with me and in particularly I enjoyed the youth specific sessions.
The Congress has made me want to get involved with a group here in my state.
I liked meeting new people looking at all the things involved in making sufferers lives a bit easier. I learnt about the rarities of particular factors and the processes of diagnosing and the help that is available for the people affected.
The things that I found most enjoyable about the congress was meeting new people from around the world and making friends, I learnt a lot about the state of youth involvement around the world which is important to me. There were several sessions on healthy eating and the importance in relation to haemophilia which I found very interesting.
May 2014 held a once in a lifetime experience for me. A chance to travel to the World Congress for haemophilia, a chance to meet amazing people from all over the world, a chance to meet others just like me and a chance to be in a room with thousands of people that actually just got it!
The Congress enabled me the opportunity to further develop my knowledge surrounding bleeding disorders and in particular von Willebrand disorder.
I was also given the opportunity to be a part of the Youth Meet and Greet program. I not only met incredible strong people with bleeding disorders but I met people of similar ages and experiences and I also got to meet partners of these amazing people as well. This rare occasion was truly awakening to be able to interact with others, learn and be inspired; but for my husband who has always been so supportive and understanding it was an opportunity where he could also relate to those of similar experiences in supportive roles.
This Congress opened my eyes to new technologies and new developments in the world of bleeding disorders and although it was hard to see just how much is needed to get VWD up there with other bleeding disorders such as haemophilia, I did come out with a positive outlook. VWD is a major area where research is lacking with high rates of severity and type misdiagnosis as well as undiagnosed VWD. More effective treatments for VWD and even the use of prophylaxis have all been recognised as an area for future research. This is an exciting revolution for me and I am excited at the possibilities this holds for not only our community but for future generations.
Did you attend the WFH 2014 Congress? What did you most enjoy?
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