Words Joe Robinson Photography Peter Stuart

Haemophilia is a rare blood condition that affects around one in 10,000 people. When a haemophiliac bleeds, a lack of certain proteins in the blood means that the usual clotting process doesn’t happen.

The result is that the bleeding doesn’t stop. It keeps pouring and ultimately, without preventative medication, it will continue to do so until the person bleeds to death. Alex Dowsett is a haemophiliac.

‘The most common form of the condition is haemophilia A, which I have. I lack the eighth stage of the blood-clotting process. I have to take a synthetic agent which allows the blood to clot,’ he tells Cyclist.

‘Without the treatment I can suffer from internal bleeding into joints, muscles and as for the external bleeding, it doesn’t really stop, plus I have it as severe as it gets. I’m OK with paper cuts and stuff like that, and road rash wouldn’t be ideal, but it’s manageable.’

Considering the dangers of professional cycling, Dowsett’s rise to the top of the sport is remarkable. Indeed, he is the only able-bodied elite sportsman or woman in the world known to have ever suffered from the condition. And to get to that point has meant overcoming the stigmas and setbacks that are an unavoidable part of being a haemophiliac.

Sticks and stones

‘I was 18 months old when my parents found out what the issue was,’ Dowsett says. ‘I bruised a lot as a baby to the point where mum and dad would pick me up, put me down and I’d have a handprint across me. They kept taking me to the hospital and the doctors kept sending them away, saying they were worrying too much.

‘It got to a point where my mum demanded a blood test, which was against the doctor’s wishes. She remembers the doctor threw the paperwork at her because he disagreed with her so much.

‘I had a blood test, then on the way home I caught myself and cut my lip. It started to clot, I went to bed, my parents then woke up to check on me in the night and found me in a pool of blood.’

Initially, the combining symptoms of easy bruising and severe bleeding made Dowsett’s parents think it could be leukaemia. However, a doctor at the hospital had an inkling that it could be this rare blood condition.

‘The blood test confirmed the doctor’s suspicions that it was haemophilia. It’s such a rare illness, it’s no surprise that it was so hard to discover.’

In Dowsett’s primary school years, treatments were scarce and so he was encouraged to avoid dangerous situations. To combat the rough and tumble of school, his mum took to sewing shoulder and knee pads into his uniform and buying him high-ankled Converse trainers for added support.

It helped, but it didn’t prevent a succession of arm slings, crutches and even the occasional wheelchair. Also, it didn’t do anything to stop the misconceptions around the illness affecting Dowsett’s childhood.

‘I wouldn’t be invited to other kids’ parties because haemophilia had an association with HIV and hepatitis because of blood contamination,’ Dowsett says. ‘They would treat haemophiliacs with concentrated blood transfusions, with a lot of those coming from the USA and many were infected. Other parents would assume that it was still the case and some even complained about me being allowed at school.’

Fortunately, by the time he got to secondary school medicine had advanced and Dowsett was self-injecting with clotting agent Factor VIII every other day as a prophylactic treatment – something he still does to this day.

Alongside that, his doctors told him that keeping fit and healthy would go a long way towards managing the condition and promote healing.

Contact sports such as rugby and football were off the table, so first came swimming, an exercise that is low impact while also perfect for working the whole body. Five days a week, in various towns across Essex, Dowsett would swim, albeit by his own admission not very well, until one day, by chance, he got the opportunity to ride a bike.

‘My dad went through a bit of a midlife crisis when I was 11 and began mountain biking. I saw him doing it and asked to join. I got stuck in and then aged 13, one of the guys he rode with brought down a road bike and let me have a go.

‘We all went to the Maldon and District CC club 10, something I still race today. On my first ride I did a 28:01 on an Eddy Merckx bike with Campagnolo gearing. I was quick straight away because I was fit and healthy from the swimming.’

It was the start of a cycling career that, 17 years later, has seen Dowsett compete in and finish the Tour de France and place fifth in the 2019 World Championships Individual Time-Trial.

Keeping up momentum

‘If I were to stop right now, I think people would say, given what I have achieved, with the condition I have, it’s unprecedented,’ Dowsett says. ‘But day-to-day I consider myself a normal cyclist who wants to achieve more. If I stopped now, for example, I’d be annoyed I didn’t make an Olympics.’

This ambition to keep improving explains Dowsett’s decision to move abroad at the beginning of 2019 for the first time in his career. The shift from Essex to Andorra came after a rude awakening at the 2018 World Championships.

‘Rohan Dennis beat me by more than five minutes in the time-trial,’ he says. ‘I took the Hour record off this guy [in 2015] and beat him at the Commonwealth Games in 2014. Now I’m five minutes behind.

‘Within a week I’d made the decision to make the change of destination. It was tough because I’d worked hard to buy a nice place in Essex but I realised I needed to go to keep competitive.

‘I’m now in a 55 square metre apartment that costs nothing, living at 2,000m. It wasn’t easy but this year was consistent for me and I had a good Worlds, a good Euros and I even finished the Tour de France so it clearly paid off. Sure, Andorra is no Essex but, by God, I am happy I did it.’

More to follow

Dowsett is entering his 10th year on the WorldTour. Over the past decade he has ridden for Team Sky, Movistar, Katusha-Alpecin and, from 1st January, he will be part of cycling’s newest top-flight setup, Israel Cycling Academy.

Also aware that cycling is now about more than just results, he has worked hard to build a social media following of 181,000 across all channels. With this reach Dowsett has used his position to educate the world about haemophilia by creating the charity Little Bleeders to support the 3,000 or so young people in the UK currently affected by the disorder.

‘Obviously, a boxing ring or rugby pitch isn’t wise for us haemophiliacs, but being inactive on a sofa playing PlayStation is just as dangerous as a rugby pitch. To be fair, that’s not only a message for haemophiliacs but for anyone, but it’s why everything we do at Little Bleeders focusses on our motto: “move more, be more”.’

Dowsett’s career achievements – including winning a stage of the Giro d’Italia in 2013, seven national elite time-trial titles, and taking the Hour record – serve as reminders to young haemophiliacs that their condition should be no barrier to following their ambitions.

‘The biggest message I send is that my team treat me no differently to other riders when I crash,’ says Dowsett. ‘Actually, I remember speaking to a mother whose child is a haemophiliac. She asked what happens when I crash. I told her that if it’s alright, I just carry on, and if I can’t carry on I probably need to go to the hospital.

‘For example, in 2010 I broke my first bone while riding in a feed zone doing 50kmh in Holland. I fractured my shoulder blade and I was panicking, but I was out of the hospital in two days, back on the turbo in seven and back on the road in less than three weeks. Then seven weeks later I became under-23 European TT champion.

‘There has only been one crash in my career where I was worried. I crashed riding for Movistar at the Tour of Poland and took a chainring to my neck. It sounds bad, but it wasn’t as bad as all that, even though my jersey was stained red. I just bled a lot because it was in a bunch sprint and the adrenaline was pumping.

‘So with that, the mother saw that I was just like everyone else. I just needed to make sure my medication came with me. It made her realise that if I was not being treated any differently in an elite-level sport that actually has quite a high risk of me bleeding, why should her kid be treated differently? That’s the most powerful thing that I’ve done.’

For more information on haemophilia, visit littlebleeders.com.

Dowsett’s year to forget

The collapse of Katusha-Alpecin left Dowsett and teammates riding in the dark

‘It’s been really stressful,’ says Dowsett of the demise of Katusha-Alpecin. ‘The guys in contract, like myself, were stuck because we were told the contract would be honoured either way. By the time we were told otherwise the other teams were pretty much filled up. So guys had to make sacrifices in either their price or ambitions. I got lucky; others not so much.

‘At one point I was thinking if the team goes, with it being an Olympic year, it wouldn’t be the worst thing in the world to ride for my local club Maldon and focus purely on the Olympic TT and the Hour record – a year without the distractions, almost like Rohan Dennis had before the World Championships. But then the Israel offer came up, and I saw it as an opportunity worth taking.’

Dowsett on…

…Remco Evenepoel

‘Take his age from the equation, and I cannot recall any rider doing what he did in the space of a month: winning Classica San Sebastian, the Tour of Belgium and then the European TT. Three completely different races, which he won with ease, and he’s only just got a driver’s licence. If he keeps his head he could be the best ever.’

…Internet lies

‘Somebody once changed my Wikipedia page to say I was an “average time-trialist” and after that I opened the floodgates to see what people would do. So far we’ve had that I was a professionally trained pastry chef, I was a model for Argos between 2010-2011 and I played the saxophone for the Doncaster orchestra.’

…Importance of social media

‘A good social media following alone will not be enough to earn a WorldTour contract as a man, but in the women’s peloton it seems your social media status is a significant part of your value to the team. We’re trying to advocate an equal playing field so your social media following shouldn’t be what earns you a place.’