A boy first… Parents of boys with haemophilia often say, ‘He is a boy first. Haemophilia comes second.’ And boys do seem to live by this motto.
People with haemophilia are interested in getting on with their lives. While haemophilia must be respected, it does not need to dominate life. Students with haemophilia get up to the same mischief and participate in the same interests as their peers. They have their own dreams and aspirations. This is perfectly normal and the student will significantly benefit by participating with his peers.
Haemophilia does not affect a student’s ability to learn or perform academically. A student with haemophilia can reasonably be expected to reach the same academic levels as his classmates. However, if the student misses a lot of school, he may fall behind and require special assistance to catch up.
People with haemophilia can participate in most sports. In fact, exercise is encouraged as it promotes healthy growth and development, and helps prevent bleeds. Cycling and swimming are particularly recommended. Contact sports and ‘adventure’ sports (e.g. bungee jumping) are discouraged as the risks outweigh the benefits. Your student, his parent/s or guardian/s can tell you which sports he should avoid. With permission, a discussion with your student’s physiotherapist may also be appropriate.
‘I Don’t Have Haemophilia!’
Because today’s prophylactic (preventative) treatment is so effective, there are a growing number of young people who cannot remember having a bleed. (Their last bleed might have been when they were diagnosed as infants.)
These young people do not realise the impact of haemophilia because the treatment masks it. They might not believe they ‘really’ have haemophilia and rebel against having treatment. This feeling of ‘invincibility’ can sometimes lead to reckless actions.
Effects on those close to the child / young person
Finding the balance between protecting a young person with haemophilia and allowing him to get on with life is not easy. This becomes even more difficult as the young person starts questioning why they need treatment when their friends do not. Parents worry about their child refusing treatment and the possible consequences of doing so.
Brothers and sisters can feel left out, especially if their sibling with haemophilia seems to get more attention than they. They may feel that parents do not love them as much as the sibling with haemophilia and may resent that sibling.
Sometimes, a child with haemophilia will play on the fact that he has a bleeding disorder to achieve some end, much to the frustration of his brothers and sisters.
“In their shoes” – stories from children / young people with the condition
“Hello, my name is Jarrad and I’m writing how haemophilia can’t stop me. I was diagnosed with haemophilia A at 8 months.
” My mum had taken me to swimming lessons when I was little. I kept going to the swimming lessons and got better as I got older. I was beaten in events when I first joined the Geelong Swimming Club, but after a lot of hard training I got better and better. My best is backstroke. Kids that used to beat me, now, I can beat them because of a lot of hard work.
” This year I reached the state final for under 14 100m backstroke and came 10th, state final for under 14 50m backstroke cane 6th, broke the Geelong District record and Geelong All-Course record. I have won a lot of medals for swimming and other sports like netball, umpiring and tennis. I don’t let haemophilia stop me from participating in sport.”
“I am 13 years old. My mum found out when I was 9mths that I had severe haemophilia A. I have never let it get in my way of playing all the sports I love. I play soccer, gaelic basketball and I love swimming and I’ve always made the teams. The only thing I’ve got problems with is I don’t give myself my ‘factor’ and that’s my choice because I don’t feel ready to do it yet so I depend on my mum to give it to me.”
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