Bonnie’s story

I have severe haemophilia A and was diagnosed at 6 months old. My mum was aware that there was a history of haemophilia in the family as her dad had it. When she was told she was having a girl, they told her there was no need to test me at birth or to worry about it further because girls don’t get haemophilia. However my mum started noticing bruises and at 6 months old I had a bleed in my eye, and later kept getting bleeds when learning to walk. Later on in school, teachers were always afraid to let me do sports and activities. I would take part in them anyway because my mum never stopped me doing anything, I just made sure I had enough treatment before and after.

I have 3 younger sisters with good factor 8 levels who do not know yet if they are a carrier and whether it will affect any children they may have. I manage my condition at home with a lot of help from my mum even at age 22 and having my own son now. When I was pregnant I was put under a consultant and was seen very regularly at my local hospital and by my consultant in Liverpool where my haemophilia centre is located. My son does not have haemophilia, but sometimes I feel bad for him on days where I am having a bleed (usually in my ankle) and I can’t take him out. I work part time and find it difficult sometimes and have to take time off due to bleeds occasionally. I was given the option to find out if my son had haemophilia before he was born, but my husband and I declined as I know from my own experience that haemophilia can be managed and you can still live a full life.

Bonnie, 22