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paediatric haemophilia - help
Hi
A friend's son in South Africa has haemophilia -the worst form. He is 10 years old. Over the last 6 months, the haemophilia has inexplicably spiralled out of control. He is having bleed after bleed after bleed - all in his joints and consequently is not allowed to walk and can only move using crutches or a wheelchair. He is having factor in unheard of quantities. He does not appear to have developed a resistance to it. His parents have taken him to the best haemotologist in the country as well as to the government research haemophilia unit. His father chairs the Haemophilia Association of South Africa, and STILL there seem to be no answers as to why it has spiralled out of control this way. the Mom, as you can imagine, is at her whits end, and the child is amazing, though very angry and frustrated at home (understandably of course).
Is there anyone out there who has had a similar experience or who could shed even a little light onto this case or give an idea of how the parents can proceed. They feel like they've tried everything and the doctors are basically asking them to stop asking.
The only thing they are still waiting for is for a specialist in Sweden to comment on the case.
Thank you for your time
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