Haemophilia isn’t about blood thickening or thinning, it’s about when the blood clots. There are 13 phases, and you need all 13 for it to clot properly. I don’t have the eighth phase.
Taking up competitive cycling, the doctor’s response was: “We would rather you play chess or a musical instrument. But if that’s what you want to do, then we will support it.” Because of this new medication and the fact it works, the doctors didn’t really know what the limits were. And they said if you break a bone, you’re going to be in hospital for a month to control the bleeding.
To help raise awareness for what a haemophiliac can achieve, I did something called ‘Miles for Haemophilia’ campaign, where I went round Europe talking to patient groups. Word was starting to get about on what I was doing. There was a lady in Portugal, I’ll never forget it, she came up and said: “Because of what you do, I know my son can lead a normal life.
The teams I’ve raced on have been really interested, certainly all the medical staff are very keen. They want to know because if things really go south, and I would say that once in every two to three years things will go properly south, they need to know what to do. There’s also addressing the issue of the needles, because I have an intravenous injection every second day on the team bus.
The other riders need to know if they see me with a needle in my arm there’s a perfectly good reason for it and it’s all above board. I did have an incident where I thought all the team were aware and they weren’t, and one guy walked in and was like, “What the fuck are you doing?”
I looked at him and said: “They haven’t told you, have they?”
To help promote awareness I’ve set up the charity, Little Bleeders. At the moment I don’t know of anyone else within top level sport who is competing with haemophilia – it’s timing, there will be more. But even with all the medication, you still take precautions to protect yourself as much as you can. Even my mum has said she’ll be relieved when I stop racing, and that I owe her a facelift for all the worry I’ve put her through. But I guess every professional cyclist’s mum thinks like that.