Right: Hamish and Jacob at Red Cake Day
“I’ve rarely seen someone with haemophilia who was older and had more experience than me. Seeing what life would be like in a few years – it makes it a lot less scary.”
Jacob, 14, who has haemophilia
It is ironic that growing up with a bleeding disorder today can be more isolating than in previous generations. With prophylaxis and improved treatments, children with bleeding disorders no longer have to go through the misery of constant emergency visits and long hospital stays. But at the same time, this means they have fewer natural opportunities to connect with each other or talk to older boys or girls about what happens next.
This issue became prominent in Beyond Prophylaxis, the HFA Youth Needs Assessment. An important outcome of Beyond Prophylaxis was the HFA youth leadership and mentoring training. The training aimed to upskill youth leaders in mentoring skills and work on opportunities for them to “catch up” with and mentor younger people with bleeding disorders.
The HFWA youth event reported in Youth News is an example of how this can work on a small local scale. Ideally these events could be larger and cover more issues relating to transitioning from being a child to adulthood, for example, through a youth camp. HFA is looking at ways to achieve this.
Young people with bleeding disorders have often met each other when they were small children at haemophilia foundation Family Camps, but lose contact as they reach their teenage years and stop going to camps.
Hamish, who is now 23 years old, is a keen participant in HFA’s youth leadership and mentoring program. Hamish spent months at a time in hospital receiving treatment, missing out on school and his chance to form friendships with children back home. Living in a rural community, Hamish knew no one else with a similar condition, so the group of young people he met through attending the Family Camps became his closest friends.
Hamish is an enthusiastic mentor to younger children with haemophilia, and is pleased to do all he can to support them.
“As a younger kid I was always needle phobic. When I learnt how to do it, I was asked by the haemophilia nurse if I wanted to show the younger kids how it’s done. Two or three of us have now been doing that for the last 10 years. All they’ve got to do is learn to put it in themselves – then they can do whatever they want. They’re free.”
Jacob is 14 years old and no longer attends Family Camps, but misses the sense that he is not the only one with haemophilia. Jacob and Hamish met at several Family Camps over the years, and reconnected at Red Cake Day in 2014. For Jacob, their friendship has meant a rare opportunity to see what the future looks like for a young man with haemophilia.
“The unique thing was meeting someone older than me with haemophilia. It was really interesting to talk with him and learn from him, to see what the future looks like. And he told me ways that I could connect with others, which I really need.”
Face-to-face activities that bring young people of various ages together are a valuable environment to foster mentoring and connection between young people. Local “catch ups”, youth camps – and catching up at events such as the Haemophilia Conference – are all important opportunities to help young people develop independence and resilience through peer support. HFA and local foundations are continuing to work on ways to provide these opportunities and underpin them with youth leadership training.
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