WFH NETWORK

Thoughts from the December 2016 Youth Workshop

“Dear Mr. Parkinson, I would like to inform you that the World Federation of Hemophilia is organizing a Youth Leadership Workshop in Barcelona, Spain, from December 2-3, 2016.  I would be extremely pleased to have you join this workshop…”

I felt a sudden burst of euphoria. I was selected! The workshop hosted 22 participants from 21 countries, virtually linked hundreds more through a Facebook Live event. The workshop was supported with funding from F. Hoffmann-La Roche Ltd., and served as a follow-up to the WFH Global NMO Training and World Congress in Orlando in July 2016 that I attended as the newly elected Co-Chair of the Jamaica Hemophilia Community (Jamaican NMO).

The workshop began with a warm welcome from Deon York, Nicola Hope, and Liliane Yan from the WFH. Predrag Mikov then gave a brief introduction on youth leadership. Accompanying this were a few presentations from some of the youth delegates on what their experiences were like in their countries; outlining the ups and downs while discussing ways in which youth improvements can be made. One presentation that stood out for me was a creative infusion technique by Harshal and Vishal from India that uses needles and tubes help get people comfortable with self-infusion. Overall, this session was an eye opener for me as I came to the realization that, despite whichever corner of the world we are from, we all shared a common denominator: there is a need for active youth leaders that will take the initiative in advocating for better care on behalf of WFH national member organizations (NMO). I also realized we need to strengthen our fellow peers’ resolve to keep positive despite the negatives aspects of having hemophilia.

Next, we learned about how to use social media effectively. This was one of the major highlights of the youth training session: specifically, how to conduct oneself on social media especially when representing our patient organizations. The session showed us creative ways of responding to criticism in a tactful manner. What I learned here was very useful to me because, as much as my online comments and posts may seem harmless in my eyes, other people may interpret them differently.  It was exciting to participate in the first ever WFH Facebook Live event!

I’m very pleased that the WFH chose to host the December 2016 Youth Workshop as an in-person event. They could have hosted it as an online conference, but there wouldn’t be any guarantee of the exclusive attention of the participants. True too, the difference in time zones could have played a major role in keeping participants engaged. Being from the Caribbean, which has a tropical climate, have never experienced snow before and this trip to Barcelona was the closest I have ever been to experiencing almost zero degrees in temperature. Imagine your hands getting numb in less than a minute!

I must give top shelf accolades to the WFH. The workshop allowed me to learn about other cultural practices from various participants around the globe. It also helped me to develop skills I can use to help support people with hemophilia in Jamaica.