Pushing the boundaries

Alex Dowsett is a man who isn’t afraid to push the limits of what is possible – the time-trial specialist, who broke track cycling's world hour record in 2015, was diagnosed with haemophilia as a toddler and is the only able-bodied elite athlete with the condition.

We spoke to him from his base in Andorra about his ongoing support for Action and why our Champions of CycleSport Dinner offered a platform to inspire others…

How much of a challenge is your haemophilia on a day-to-day level?

Haemophilia is not a challenge now – it was certainly more in my younger years that it did pose its challenges. Now it’s all very well managed; I have to have an injection every two days when I’m training and every day when I’m racing, which basically brings my blood clotting levels up to a pretty normal rate. This allows me to go and race and lead as normal a life as anyone else.

When I was younger, it posed challenges because the medication was still quite new. I was diagnosed at 18 months old and my mum and dad had to take control and responsibility of the condition until I left home…Now the treatment is prophylactic, so it stops me having problems, but back then it was more reactive. It would take for me to have an internal bleeding episode for us to administer the medication. I had to take more precautions than I do now in terms of what sports I participated in, which meant I had to sit out a lot of school activities like rugby and football and that’s not easy. Luckily my parents knew I wanted to do sport and so they channelled my enthusiasm into sports that were a bit more haemophilia-friendly. Then I ended up in a sport that is really haemophilia-friendly – until you crash!

Have you ever had a really bad crash?

Multiple. With the treatment being reasonably quite new, no doctors ever said I couldn’t do road cycling. They said they would prefer I did other sports, but they never said they wouldn’t support me and I was quite lucky in that respect because that level of encouragement wasn’t consistent across the country. One of the big ones was my first bone break: When I was younger the doctors said that breaking a bone as a haemophiliac was really bad news and I was probably looking at a month in hospital to control the bleeding, but by the time I did break my first bone in 2010, which was my right shoulder blade, I was out of hospital the same day, back on my bike seven days later and back on the road 12 days later. Not something the doctors knew about but I had European Championships to train for so it was a case that if I felt okay, I went and trained. I think I’ve trodden new ground as a haemophiliac – I’ve thrown caution to the wind, but always with respect for haemophilia. We made our own decisions that I could go bike racing but probably shouldn’t step into a boxing ring.

Do you feel there is a increasing awareness of the variety of conditions people are living with?

When I was young, my parents were actually brilliant for that. You can get drawn into thinking, ‘This isn’t fair, because I have got it and others haven’t’. But my mum always said, ‘Well, everyone has got something wrong with them – nobody’s perfect’ and I just remember a schoolboy me looking around the class at everyone and trying to work out what was wrong with them. I’m quite grateful to my haemophilia in a lot of ways because my parents and I opened doors that we otherwise wouldn’t have done without it: I would have been playing football and rugby and I wouldn’t have been searching for something else to do. So the key message is to take what you’ve got and try to make the best of it.

What has the response been like to your charity Little Bleeders?

A lot of the work we’ve been doing has been behind the scenes, a lot of government lobbying and policy change. It isn’t very fashionable but it’s so important – for example, consultants can have such a difference of opinions. We had a family not so long ago whose consultant said that if their son played football, he would cut off his medication. The quick fix was to just change hospitals and switch consultants and for that specific family, that rectified the problem. But then there was the thought that this was something that needs addressing, along with the levels of physio care for haemophiliacs. When you get a bleed, there is a rehab aspect to that and there was a difference in care across the nation, so that has been a big focus of our work.

Just recently we have managed to launch something a lot more tangible and that is a sports fund so families can apply for funding if they require financial help for their child (99 times out of 100 haemophilia affects boys, but there are cases of girls having it as well) to access swimming lessons, for example. If they’re showing promise in a certain sport, we can help to move that forwards financially. We have seen a lot of applications, particularly during COVID, as parents are trying to do the best for their sons or daughters in what is a very tough situation. We really hope the sports fund can help, even if it’s simply petrol money to get to swimming classes, because it has been a tough time for everyone.

What difference has becoming a parent made to your awareness-raising work? Do you feel more motivated?

My daughter is a carrier of haemophilia, as my mum is, so there’s kind of a bond there. Even though it’s a genetic condition, it is not something that we view as a bad thing but that is a journey that she will have to embark on if she has a son in the future. But I think with the way haemophilia treatment has progressed over the past 30 years, in another 30 – with the progression of gene therapy and everything – then the future is very bright for haemophiliacs. I want her to enter into a haemophilia world where there is equal care and opportunities and just the best start possible if she were to have a little boy.

You’ve been a strong supporter of Action for a number of years – why it is such an important cause for you? Are you looking forward to the Champions of CycleSport Dinner in November?

When I first came to the dinner, I was invited by Paul Oz, the artist, as a guest – to be honest, I had heard of the event but I didn’t really know much about the charity. I sat through that first dinner thinking, ‘There is no one more qualified to help this charity than me. There are riders here that have won bigger races and Olympic medals, but in terms of someone that can from the heart give a completely relatable message of the value of what Action Medical Research does, I am exactly the right person’. Then the following year I hijacked the stage, I was very insistent that I had to be able to speak! I remember Declan started talking about cycling and I just took over the microphone and spoke about what Action meant, as they have had an impact on haemophilia in the past.

We had recently lost some close family friends to Ehlers-Danlos syndromes: two of the family of four died within six months because there is no help for the form they had as it’s so rare. They were basically just told to be careful but the mum slipped in the bath, and her son had an accident playing football, and they both died. I talked about how important it is because Action Medical Research have done some incredible work on rare diseases. If you take them individually, it can seem there is not much help but when you look at them collectively, the impact is colossal. That is why they became so important so I’m very glad that I forced my way in!

Find out more about our Champs Dinner at https://action.org.uk/champions

Find out more about Little Bleeders at www.littlebleeders.com