As he stood on the podium to receive his gold medal at the Glasgow Commonwealth Games in 2014, cyclist Alex Dowsett savoured his victory — and not just the one over his competitors.
His win also marked just how far he’d come since his childhood, when he’d had to sit out many sports lessons. This is because Alex, 28, has haemophilia, a genetic disorder that affects the blood’s ability to clot.
‘Football, hockey and rugby were considered too dangerous,’ he says. ‘It was particularly difficult for me as I’ve always had a competitive instinct — something I get from my dad [motor sport driver Phil Dowsett].
Alex Dowsett, 28, from Great Baddow, Essex, struggled with haemophilia as a child. When he was younger, a cuddle could leave him bruised. He won a gold medal at the 2014 Glasgow Commonwealth Games
‘Dad used to tell me stories about all he’d achieved, and I wondered if I’d ever have anything to tell my kids.’
Normally, if someone has a minor cut, proteins called clotting factors combine with platelets to make the blood sticky so that it clots. But people with haemophilia lack one of these factors, so they bleed for longer.
As well as external bleeds, the condition can cause people to bleed internally, even from a seemingly insignificant bump or knock — which is why Alex had to avoid contact sports.
The cyclist wasn’t allowed to take part in football and rugby at school as it was considered too dangerous. Alex has the more severe type of haemophilia, where the protein factor VIII is lacking
The risk is that blood will get into the joints and muscles causing pain, stiffness and swelling. Left untreated, this can permanently damage joints. And bleeds in the abdomen or brain can be life-threatening.
There are two main types of haemophilia. Alex has the more severe kind, type A — where the protein Factor VIII is lacking (in the other, type B, Factor IX is deficient).
Warning signs of both include bleeding excessively from injuries, nose bleeds, surgery or dental extraction, bruising easily, and blood in the urine or faeces (a sign of bleeding in the urinary or gastrointestinal tract).
Around 6,000 people in the UK have haemophilia. It usually affects men but can be passed down by either parent.
However, 50 per cent of cases occur without anyone else in the family having had the condition, says Dr Dan Hart, a senior lecturer and consultant haematologist at the Royal London Haemophilia Centre.
He says: ‘Some people think if the parents don’t have haemophilia then their child can’t have it. It means there can be delayed diagnosis, and in some cases social services have been called to investigate unexplained bruising in a child. It’s only when correct blood tests are done that it’s discovered a child has haemophilia.’
Alex, from Great Baddow, Essex, was diagnosed at 18 months, after bruises from even gentle contact rang alarm bells with his parents.
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He says: ‘When I was just a few months old, they noticed even picking me up for a cuddle left me covered in black bruises.
‘Mum went back and forth to the GP. Eventually she demanded a blood test as she was sure there was something wrong. The GP literally threw the consent form at her saying she was putting me through unnecessary trauma.’
Leaving the surgery, Alex tripped, cutting the skin above his top lip. ‘When my parents checked on me later I was lying in a pool of blood,’ he says.
‘An emergency doctor came out to the house and said he thought I may have haemophilia.’
Alex’s earlier blood test confirmed the diagnosis. ‘It was a huge shock as no one in our family had it,’ he says.
The early years after his diagnosis weren’t easy. If he even brushed against a door, he would bleed into a knee joint, so he would need injections of artificial clotting factor, and he would be on crutches for a few days. Sometimes, bleeds would happen spontaneously.
He says: ‘When I was just a few months old, they noticed even picking me up for a cuddle left me covered in black bruises.’ A blood test confirmed Alex had haemophilia (file photo)
To protect his knees, Alex’s mum would take the shoulder pads out of her jackets and sew them into his trousers.
There was also a lingering stigma surrounding the condition. In the Eighties, more than 1,000 haemophiliacs became infected with HIV from blood products (back then donated blood was the main treatment).
By the time Alex was born, all blood was screened and artificial clotting factor introduced. Even so, he adds: ‘Mum says I wasn’t invited to birthday parties’.
Meanwhile, family support groups were ‘full of gloom and doom’. ‘Everyone focused on the dangers and what their kids couldn’t do,’ says Alex.
Fortunately, his parents saw a consultant haematologist who stressed the importance of exercise. Alex explains: ‘Exercise is hugely important for strengthening bones and muscles, which can help prevent bleeds by stabilising joints and making them more likely to act as shock absorbers.’
But the consultant advised against contact sports. ‘He said head injuries can be catastrophic for haemophiliacs, so he recommended swimming,’ says Alex. ‘I’m sure most parents’ instincts would be to wrap their child in cotton wool, but my parents took the consultant at his word about getting me physically strong.’
So Alex joined a swimming club. ‘I wasn’t a natural swimmer, but I still had this drive to be the best at something. Dad understood it, so when I was 11 and asked him if I could join his mountain biking group, he said: “Yes”.
‘When we told our consultant, he backed me completely.
‘Obviously cycling isn’t without its risks,’ he adds. ‘I wore a helmet, knee and elbow pads.’
By now, Alex was also having preventative injections of artificial Factor VIII every two days — the standard treatment for severe forms of haemophilia. This keeps levels constantly topped up, so it is safer to take part in sport.
As a consultant warned against him taking part in contact sports, Alex joined a swimming club. He then started at a mountain biking club and became the Under-17 Schoolboy National champion
And Alex excelled at cycling. At 14, he came second in the Under-17 Schoolboy National Championships. He was talent-spotted by the British Olympic Development team and first represented Great Britain at 16.
‘When I cycle I don’t worry about my haemophilia,’ says Alex. ‘If you worry about going too fast and coming off that’s not good.’
Although he’s suffered injuries — ‘a broken collar bone, shoulder blade, elbow and a couple of ribs’ — which put him out of the past two Olympics, his condition has not been an issue.
Today, he tops up his Factor VIII before races and his back-up team carry extra should he be injured. If he is injured, he stills bleeds, but no more severely than someone without the condition.
In 2014, Alex took gold at the Commonwealth Games in the cycling time trial. In May 2015, he set a world record in the prestigious UCI Hour time trial, only for Bradley Wiggins to break it a month later. Alex will challenge the title again later this year.
He is also the founder of the Little Bleeders charity, which supports young haemophiliacs in sport, and raises awareness of the importance of physical activity.
While rugby and boxing are still regarded as too risky for haemophiliacs, topping up their clotting factors before training makes it safer for them to do many other sports, says Dr Hart, who is a trustee and lead clinician at Little Bleeders.
As for treatment, a pioneering international trial using gene therapy, which the Royal London Hospital is taking part in, offers hope of a potential cure.
‘Our team have injected the gene inside a virus into patients,’ says Dr Hart. ‘The liver then started making Factor VIII.’
Meanwhile, Alex is determined to get to the Tokyo 2020 Olympics. ‘I’m doing these challenges for me, but also to inspire other haemophiliacs to be sporty and see they can achieve,’ he adds.