How was your first boy diagnosed?
My first boy was 10 months old when he cut his finger on the dishwasher. The bleeding wouldn’t stop. We went to the doctor who referred us to the hospital. This led to a week’s stay there, then after diagnosis he was transferred to a hospital with a specialist haemophilia treatment centre.
Have any of your sons developed an inhibitor at any stage during treatment? Describe the impact this had.
My third son developed an inhibitor when he was first on prophylaxis. The inhibitor had no real impact on him, but I was incredibly worried. It went away really quickly with extra treatment.
Has haemophilia impacted on your life?
Yes. I think before regular treatment the haemophilia was in control of our life, but now we are controlling haemophilia. You think you are in control but you need to remember that it could still come back and bite you.
How often and where do you administer product – prophylaxis or on demand?
I administer the factor prophylactically at home before school. It can be stressful with three boys but that’s just how it is.
Do you think your boys have a normal life?
Yes, I do. None of the things that they can’t do is anything to worry about, like boxing or rugby. There isn’t anything that my boys want to do that they can’t do.
When did you start to take control of your sons’ treatment?
When my first son started prophylaxis I started giving him treatment myself using an implanted port. I think these are the best thing since sliced bread. It’s easier for the boys to understand treatment and have treatment [using a port] because it’s easier than infusing directly into a vein.
What would you tell a person who does not know about haemophilia?
Being able to lead a relatively normal life with haemophilia is down to good management. I think it’s different with inhibitors.
Has having boys with haemophilia stopped you from doing something you would have done otherwise?
Now the boys are older me and my husband could go away for a week’s holiday, but we can’t because someone has got to stay with the boys to do their treatment.
How often do you consult a member of the Healthcare team?
Only when a problem arises, it could be every month, every week or twice a year.
If you could make an improvement to your current therapy what would it be?
If I could, I would choose for them not to have treatment every other day, but then I would still want the treatment to be as effective. I don’t mind their treatment being every other day as long as it works.
Can you tell me a good thing about haemophilia?
You get well looked after and have regular checkups at the hospital.
Can you tell me a bad thing about haemophilia?
The boys can suffer pain and sometimes miss out on activities with other children. But they’re not in pain very often, just when they have a bleed.