Part 3: The Congress (Sam's Travels)
Wed 1 Mar 2017
Sam is a leader and mentor of the youth community across Australia and is involved with his local community through Haemophilia Foundation New South Wales. Recently, Sam was the recipient of a Go For It Grant, which helped him to attend the WFH Congress in Orlando. Here Sam tells his story of travelling to Orlando and attending the Congress
Part 3: The Congress
Congress, for me at least, started bright and early on a Sunday morning. After waking up very early to avoid the registration desk, I had my breakfast and decided that it was a nice enough day for me to walk to the Convention Centre. This was a bad idea. While it may have only been a 10-15 minute walk from my hotel to the Convention Centre, the WFH Congress was on the opposite side of the Convention Centre to the side that I entered. I had to walk through two other conferences to the right part of the building. When I got to Congress though, it was inspiring. The first and most eye-catching thing that you see is a gigantic red banner that had the message “Treatment for All” which was the message for this year’s Congress. Inside the registration room, they were setting up the Exhibition Hall for it to be open in time for the first day of Congress. All in all it only took me about 10 minutes to register and get my bag full of information and advertisements. Shuffling out of the registration hall, I walked around and took a few more photos of the hall, as well as the massive entrance and escalators. I sat down to go through the information in the bag provided for me, doing some “light” reading of the abstract book, I managed to catch up with some friends and find Sharon Caris (Executive Director of HFA) and Gavin Finkelstein (President of HFA) who were attending.
What followed in the coming week was an absolute whirlwind of making friends, shaking hands and learning about the current state of the Bleeding Disorders community. I could ramble on and on about all of the different dinners I went to, the meetings and the copious hours I spent at different booths connecting with all of the different people passing through, I’ll keep it (relatively) short and talk about the most important and impactful moments, sessions or epiphanies that I experienced.
The first and most humbling experience was meeting the sheer amount of people from around the whole world that are all here for the same reason - whether they are people with a bleeding disorder looking to see what advancements are happening and how other people are treating, to the doctors and nurses that are looking to other countries as to how they are treating people and the different procedures. That’s thousands of people, all experiencing the same thoughts and problems that you are. Haemophilia can sometimes be a really personal disorder to suffer through sometimes, and knowing that there are so many other people just like you is eye-opening, and really helped to set me at ease in this large crowd of so many people.
HIV and Ryan White
I attended a talk hosted by Jeanne White-Ginder, the mother of Ryan White, a teenager with haemophilia who died at the age of 18 from HIV/AIDS after getting it from HIV-infected clotting factor. This talk was incredible. It was inspiring, touching and an amazing window into a part of haemophilia history that is often not talked about among people in my generation. I had absolutely no idea about the story of this young man and how tragic it was – and what he achieved. It must be hard for the older generations to talk about, considering all of the loss that they suffered at the hands of contaminated blood products. I think it’s important to keep this dialogue going with the younger generations of people with haemophilia so that they can begin to understand just how good current treatments are and how lucky they are compared to just a decade or two ago.
Women and bleeding disorders
The major session that I want to talk about was Bleeding and Women: Time for a Paradigm Shift. I have a lot of female friends in the bleeding disorders community, so this was one of the sessions I was determined to attend.
The five different speakers all covered a different area of the female bleeding disorders community. Many different perspectives and statistics were given out during the talk. They discussed the difference in haemophilia treatment and testing between females and males. One example of this is the age where they are often tested for their factor levels.
The second speaker, Tatiana Markovic from the Serbian Hemophilia Society talked about the percentages and amount of females with or carrying bleeding disorders that Serbia has, with that number being 850 female patients. 30% of those female patients are symptomatic carriers. Speaker number 3, Yannick Cole from the French Hemophilia Society talked about the experiences that females have had getting treated and getting to be classified as “having haemophilia” rather than “having haemophilia symptoms.”
Hearing about the lack of information and awareness about women with bleeding disorders was shocking for me, and it is truly my belief that the haemophilia community can be very male-focused. It can be hard for females to be properly heard or talk about their problems on a larger stage. I hope this discussion at a world-wide level can achieve some changes now.
WFH General Assembly
Haemophilia Foundation of Australia (HFA) also granted me the amazing chance to sit-in and be one of the official Australian representatives at the World Federation of Hemophilia General Assembly, the day after Congress finished. I got to sit behind Gavin Finkelstein, HFA President, and observe the proceedings of adding new countries to the membership of WFH. After the first session, Gavin even suggested I take over as the voting representative for the rest of the day! Once we came back from morning tea, it was my turn to sit, and be the official representative of Australia on the global haemophilia stage. The HFA decisions had already been made so my job was to represent them. I had the opportunity to cast the HFA vote for new members of the WFH board, as well as casting the HFA vote on the changing of by-laws and the location of one of the Congresses coming up in a few years! (Not spoiling it though!) Thank you HFA for trusting in me, and giving me the chance to represent the country on the world stage!
There was plenty of fun to be had outside of the Congress too! The multitudes of lunches, dinners and shopping with friends was just as important and as helpful as attending sessions to me! Overall, the WFH 2016 World Congress was a humbling and exciting experience and a wonderful event to be a part of. Understanding the sheer scale of the community and the different opportunities and friendships that it opened for me has changed my life for the better and inspired me to give back more to this community. I would urge everyone to attend one of these Congress’s if you could. The amount you can learn, the people you get the chance to meet, and the lasting friendships you can create are reasons enough.
Social events at the Congress
There was plenty of fun to be had outside of the Congress too! The multitudes of lunches, dinners and shopping with friends was just as important and as helpful as attending sessions to me! Overall, the WFH 2016 World Congress was a humbling and exciting experience and a wonderful event to be a part of. Understanding the sheer scale of the community and the different opportunities and friendships that it opened for me has changed my life for the better and inspired me to give back more to this community. I would urge everyone to attend one of these Congresses if you could. The amount you can learn, the people you get the chance to meet, and the lasting friendships you can create are reasons enough. Please keep checking National Haemophilia as well as Factored In for more updates and stories from my trip to Orlando, Florida.
Missed an episode of Sam's Travels?
Part 1: Travelling to Orlando
Part 2: Travelling with haemophilia