Mark's story

Mark has haemophilia B which is a blood clotting disorder. His doctors mentioned there was a clinical trial about to start at Royal Prince Alfred in Sydney. Watch Mark's story.

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[Mark Lee]

I'm Mark Lee. I live at Ocean Grove. Motor mechanic by trade. I've got 3 kids, a boy and 2 small girls. I've got haemophilia B, which is a blood clotting disorder. If I was to roll my ankle, it'd swell up and keep bleeding. Try to slowly dislocate the joint. Both me and my brother weren't allowed to play any sort of impact sports. My brother passed away with issues from haemophilia B.

I was up at the Alfred Hospital in Melbourne, speaking to my doctors up there and there was a clinical trial starting. I thought, well, I'll jump at any sort of trials. May not help me, but it might help others. I was a bit on the whole thing of, it may work, it may not. They were pretty confident that it was going to work from the start. Boosted my confidence levels a lot.

The trial that I was in ran absolutely brilliantly. The communication between me and the team up at the RPA was absolutely fantastic. Because it was a success, I go off bushwalking and camping and all that sort of stuff now. I don't have the issues of slipping or hurting myself and being out of action, not being able to muck around with my kids.

I'm hoping that it'll change lives in my family for generations to come. I do have a daughter that could carry the haemophilia B gene on. With how much the haemophilia B has affected our family, if we could see an end to it, it'd be quite an exciting time.

[Voice Narration]

Authorised by the Australian Government, Canberra.

Video type:
Story
Date of official publication:
Description:

I have haemophilia B which is a blood clotting disorder. Both my brother and I weren’t allowed to play any sort of impact sport as children and my brother actually passed away with issues from haemophilia.

When I was at the Alfred Hospital in Melbourne speaking to my doctors, they mentioned there was a clinical trial about to start at Royal Prince Alfred in Sydney. I thought it may not help me but it may help others.

The trial is now finished and has been a success. I can now go bush walking and camping without being concerned about slipping or hurting myself, being out of action, or not being able to play with my kids.

I’m hoping it’ll change lives in my family for generations to come.

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Tags:
  • About clinical trials