Youth News

Caleb

On Sunday the 26th of June, six young people with haemophilia attended the Australia Football League (AFL) round 17 in Hobart, to watch the Hawthorn Hawks Play the Gold Coast Suns.
Before the game began, we met Chris Gordon, an AFL Boundary Umpire, who has umpired and also sat the Bench in AFL Grand Finals!
I’m a boundary umpire for the Tasmanian State League and it was handy to hear Chris talk about what he does. It was also interesting to hear how some things were different to what I do.
I believe this was beneficial for the youth attending and as well as their parents, as they were able to ask questions about the difference between what Chris and I do in our umpiring and also about how they could get involved in a similar way. Some of the topics that we covered included preparing for games and recovery. I have even used some of the tips that Chris gave us!
I helped create some pathways for the youth who were interested by providing them with key contacts that both Chris and I had found helpful in our umpiring careers.

A really special part of this event was being able to go into the Hawthorn rooms and watch how they warmed up – this was particularly exciting and interesting for me because I’m a Hawthorn supporter.

After we saw the team warm up, we went back to our seats and enjoyed the game!
Go Hawks!

Chris’ story is on Factored In – visit www.factoredin.org.au to read more.

Jenna

I was given the opportunity to attend and speak at this year’s World Congress in Orlando. This was my second Congress, after attending ours in Melbourne in 2014. I would like to share with you a few parts of this year’s Congress I enjoyed the most.

WFH Youth Leadership Advisory Committee Meeting (YLAC) & Youth Session

I was invited to speak at the youth session, held just before the Opening Ceremony. The session was about youth transitions and advocacy. I shared my story of transition from pre-diagnosis to diagnosis (as a young person diagnosed after childhood), and I very much enjoyed sharing my story. In this session, those in the room also heard stories from fellow youth leaders from countries such as Egypt, the United States and Mexico about how they manage their bleeding disorder personally, as well as the work they do as advocates in their countries. I learned a lot from fellow youth leaders and advocates in this session – if you are interested in being a leader and advocate in the community, I can definitely recommend being involved at the international level. There is a lot to learn from the rest of the world, and they’re pretty cool people too.

Focus on treatment in the developing world

A theme that came through in many sessions this year at Congress (including the youth session) is the gap in availability in treatment and care in developing countries around the world. In our corner of the planet, that includes countries like India, Bangladesh and Indonesia. For most patients in these countries, access to factor concentrates, and even older products like cryoprecipitate and fresh frozen plasma, is not possible or is severely restricted by cost. These patients often get their first access to prophylaxis at events like World Congress through the on-site treatment room and product that has been donated, then have to return home with little or no product. Hearing from other young people in the session I spoke in very strongly highlighted to me how lucky I am to have been born in Australia with access to safe and free treatment. A WFH priority is to close the gap between those who have treatment and those who have none.

I can recommend a video series on Treatment for All produced by WFH and a fellow youth advocate, Patrick James Lynch – www.wfh.org/en/treatmentforall

Focus on women with bleeding disorders

Perhaps my favourite session at the WFH 2016 Orlando Congress (after the one I spoke in!) was entitled: Bleeding & Women – Time for a Paradigm Shift. There is currently a strong understanding around the world that the area of women with bleeding disorders is under-researched and under-supported, but there is a lot of support for change. There was an exhibition booth at the Congress exclusively run by women, and a keen interest in perspectives from females with bleeding disorders – I personally had conversations with other youth with bleeding disorders, industry and NMOs that show that now is the time for change. I encourage females to get involved in the community and share your experiences – and as someone who has spoken at in a Congress session about my female-specific bleeding issues, I can also attest to the fact that you will be supported to be involved. 

Next up, Glasgow!

The Scots introduced themselves in both the Exhibition Hall and at the final dinner – with scotch, kilts and bagpipes! A World Congress is a wonderful experience for a person with a bleeding disorder. Attending an overseas Congress takes quite a bit of planning but is something I recommend.

Sam

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 attended the WFH Congress in Orlando. Here is part of his exciting experience.

The Congress was an absolute whirlwind of making friends, shaking hands and learning about the current state of the bleeding disorders community.

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. Please keep checking National Haemophilia as well as Factored In for more updates and stories from my trip to Orlando, Florida.