Bailey explains how he dealt with the challenge of infusing his treatment when he had a fear of needles.
My name is Bailey. I am 16 years old and I have moderate haemophilia A.
For most of my younger years, the only person I knew who had the same condition as me was my mum, who also has mild haemophilia A. It wasn’t until we attended our first haemophilia family camp that I met other kids my own age with haemophilia.
It was a really nice feeling to be around other kids who had similar challenges to myself as a result of being born with a rare bleeding condition. I found watching the other boys self-infuse very confronting as the only time I receive factor is at the children’s hospital and up until recently I have had a fear of needles. Most of the boys I know have severe haemophilia and I have always admired how brave they are self-infusing factor from such a young age.
Self-infusing at camp with the haemophilia nurse watching and advising
Living with moderate haemophilia means…
I am very grateful to have only moderate haemophilia as it means I do not need to worry about spontaneous bleeding however I think I am a lot more cautious in my everyday actions than my friends with severe haemophilia as my factor VIII (8) levels are low every day and it’s a really big deal to go to the hospital whenever I get injured.
Overcoming my fear of needles
Now that I am a teenager and I want to be more independent, I have been able to overcome my fear of needles. The haemophilia nurse at the children’s hospital has now trained me up to be able to give myself my desmopressin medication subcutaneously (under the skin) by injection. This means that when I am on camp or staying at friends’ houses, I know I can help myself if I get injured. This has made me relax a lot more.
What’s the best thing?
The best thing about having haemophilia is the community. I have made so many friends in the haemophilia community and the family camps are so much fun.
Photos supplied by Bailey and his parents and HFV and used with permission.
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