‘Make it a family conversation’.
This is the advice Zev, a man with severe haemophilia, would like to give to families affected by haemophilia. Zev has two sons, neither of whom have haemophilia, and one daughter whom he realised at an early age would carry his altered gene.
‘My kids knew I had haemophilia. We were very open. There were lots of signs because of the bleeds I had before I started prophylaxis [preventive] factor treatment. But they also saw I was ok, that I was working, active, involved in everything.’
‘When my daughter was 12 years old we went through a particularly difficult time. My wife passed away. Before then we hadn’t discussed with our daughter how she might be affected. But I knew I needed to talk to her because the day might come when she would have some decisions to make.’
‘I sat down with her when she was about 15 and told her she had an X that was normal and an X that was not normal. Since then she has understood the situation if she were to have a child. Her response has been “I’ll take that risk”. She’s aware of the new treatments and, looking ahead, of a potential cure. She isn’t fearful of what the future brings if she decides to have children. I don’t think she would hesitate.’
Looking back, Zev has a few tips about talking to girls who might have the altered gene. ‘I don’t think you need to worry a child about heredity, but you might have to talk about periods before they start and encourage her to tell you if she has heavy periods. Then when she starts to date you can talk about how it’s inherited. Girls might not want to talk a lot about it but they shouldn’t be left to guess.’
‘Normalising haemophilia by making it part of general family conversation helps. Often there’s no obvious signs of haemophilia with current treatments so men with haemophilia might put it on the back burner. But these conversations need to be had. You shouldn’t protect your kids from things that might be necessary.’
